Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

Altered diabetes states.

January 26, 2015 – 9:54 am

This is one of those #makessenseifyouhavediabetes stories, and it’s also a partial chronicle (not chronic) of a dream from over the weekend.

Somewhere in the night, I started dreaming that The Great Spousal Unit and I were in a department store, shopping for shoes. These were to be new shoes for me, and I’m pretty finicky about the shoes I buy. So I was taking too long, trying on shoes, putting them back, etc., and suddenly Maureen “remembered” something she needed to look for in another department. At this point, this is not too different from the norm.

But then, for some reason, I needed to find her again, so without putting my shoes back on, I started wandering through the store looking for my wife. And, like usual, I covered every department in the store, multiple floors, asking multiple people if they had seen her. They all said no, they hadn’t seen her.

But as I was walking away from one person I had asked, I heard her mention to someone that there was a customer walking through the store without shoes on. I was violating the “no shirt, no shoes, no service” rule. Now my paranoia was kicking in, and I was simultaneously looking for my wife and trying to dodge store security, who obviously wanted to cart me off to “mall prison”.

This continued on for some time, until I made it back into the shoe department, looking for the pair of shoes I walked in with. As dreams go, this was typical: I’m frantically searching for my shoes where I had left them, and I could see store security coming right after me.

Just before they closed in on me, I woke up suddenly. Being it was a weird dream, I took a moment to do a BG check: 52 mg/dL.

Must have been all that running around the store.
 
 
 

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Rage against the healthcare machine.

January 23, 2015 – 9:42 am

This may shock you, but I have a confession to make:

I went ten years without visiting a dentist.

Back in December I mentioned briefly that I had been dealing with a dental issue. Well, now it’s over, and I’m a lot poorer dollar-wise. The dentist (Maureen’s dentist) was thorough and did a great job.

Prior to that, I didn’t visit any dentist at all for a decade. Why?

Well, ten years is a long time. So the reasons varied from time to time. I originally stopped going after another botched procedure from a really awful dentist. It turns out that botched procedure was on the same tooth that needed to be worked on this time. I’m confident that this new fix is much better, and will be good for years to come.

And that was my first problem. I have been to many dentists over the years. My count is 11. Of those, only three (this latest one included) were worth a damn. The rest were incompetent, prone to creating great amounts of pain without believing they were doing so, or just crooks who wanted my money but didn’t do anything about my problems. Or some combination of the three. The first good dentist I had, I had to leave because I moved out of the city he is in. The second good one became too busy and pushed me off to the other dentist in his practice, who was the one who performed the bad procedure that caused my present-day issue.

After that last one (the eighth horrible dentist I’ve encountered), I vowed to never again see a dentist unless the need was urgent. Oh, I know that dental hygiene is important for everyone, including People With Diabetes. I’m a diligent brusher, and a maniacally-obsessed flosser and mouth-washer. But the way I looked at it, I was experiencing more problems, and throwing more good money after bad on dental work that either wasn’t helping me or needed to be reworked later, that I figured I would be better off on my own.

So, now that I’ve found another good dentist (only the third in my entire life) who does good work, will I visit more often? Probably not. Only this time, it has more to do with money than anything.

I make a decent middle-income salary. But the sad fact is, like so many other things in our lives these days, there is really only enough money in the budget to take care of one set of teeth in my house, and that’s Maureen’s. The vast majority of our healthcare spending goes toward taking care of my diabetes, and so, when things get to where we realize we can afford something else for one but not both of us, most of the time that money goes for Maureen. It’s disgusting that in our country, healthcare costs are so crazy that someone with an income like mine (who has insurance) still has to make decisions about what medical procedure to pay for, and what to leave out. Even for my teeth. But that’s the way it is. And I shudder to think what someone with less has to decide on.

I’m not proud of how I’ve managed my dental health over the decades. But this is my reality. And the reality is that while I used to rant against dentists, now I’m ranting about the cost of the entire healthcare system. Even if I find someone I trust, there is no conceivable way for me to pay to fix everything in my mouth while still paying for the rest of my and my spouse’s overall healthcare. For now, this is what I have to deal with. I finally have a dentist to go to for urgent care, but not for preventive care.

And yeah, I’m a little pissed off about it.
 
 
 

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Discussing the President’s Precision Medicine Initiative.

January 21, 2015 – 10:50 am

Well, he did it. The President of the United States mentioned diabetes in his State of the Union address on Tuesday night:

“I want the country that eliminated polio and mapped the human genome to lead a new era of medicine — one that delivers the right treatment at the right time. In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable. Tonight, I’m launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

I was very excited to hear this. And then, I almost immediately started researching “Precision Medicine Initiative” to see what the President was really talking about. Also, as a #WeAreNotWaiting fan, I was very interested in the last part of that statement, “to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

To be honest, I haven’t found out much about that last part, except that it kind of ties in with the Precision Medicine Initiative idea. What that means is the President is beginning an initiative to further study genome mapping, not only of our personal DNA, but of diseases like cancer and diabetes. The hope is, of course, that if we know more about the genome sequencing of diseases in our bodies, we will be better equipped to treat them effectively. Or possibly cure them.

How successful will the President’s efforts be? That depends on how much funding the initiative gets from congress. And right now, congress is more interested in cutting taxes on people earning 2,000 times what I earn in a year than they are in funding research. Unless it might help someone or some corporation to earn 2,000 times what I earn in a year, all for helping me to continue managing my diabetes as they, not I, see fit.

I’m also concerned about what will happen if we actually find out something meaningful through this initiative. Will that information be widely shared, in the most transparent way possible, so anyone who wants to act on that information can do so, rather than restricting the benefits of the research to those most able to capitalize on the results? That’s a long question, and I fear the answer to it may be just as complex.

Skepticism aside, it was nice to see our President mention diabetes in the State of the Union address. As someone living with diabetes for the past (almost) 24 years, it was gratifying to see the urgency of curing diabetes on the same plane as cancer, which always seems to get more notice.

I really don’t know if the President’s Precision Medicine Initiative will yield any positive results, how long it will take, or if it will get off the ground at all. But I do know this: The more we know, the better equipped we will be to either act on what can be found from mapping the genomes of our disease states; or, the better equipped we’ll be to say it’s still a crapshoot and anything can still happen with my diabetes.

This is how things happen with State of the Union speeches. The President might have a laudable idea, and then congress may support it (or not), and eventually, it may produce meaningful returns. That may sound defeatist in a way, but we have to start somewhere. The President could have left this out of his speech entirely. By including it in his address to congress, he was saying this is an idea whose time has come, and why shouldn’t we learn more?

Why shouldn’t we indeed, Mr. President. Let’s get started.
 
 
 

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Scholarships! Get your red hot scholarships!

January 20, 2015 – 12:29 pm

This past Wednesday’s DSMA Twitter Chat was all about travel and diabetes. Actually, it turned out that travel and diabetes was part of it, and travel for diabetes was another part of it.

Anyway, one of our questions was:

Are you aware that there are groups who offer scholarships to attend diabetes events?

I was shocked to find out that many were not aware of this fact. That doesn’t mean there’s something wrong with those people. Rather, it means we, as a community, need to do a better job of letting people know about said scholarships and we need to do a better job of supporting those organizations who do award scholarships.

Every time a semi-big diabetes event occurs, or someone writes about their child with diabetes going away to a camp or something, a lot of hand-wringing goes on about who is there, and why, or how, they got there in the first place. Well, we get there a number of ways (and I realize I’m using “we” with a very big umbrella here). Sometimes these things are geographically close to us. Or we actually, you know, save our money so we can afford to get there. Some events are invitation-only and travel is paid for those who attend. And yes, sometimes, we receive scholarships.

I can’t do anything about those first three things. But as far as the scholarships are concerned: I can let you know about them, and then it’s up to you to either apply for them or not. And if you have a desire to go, and you can’t quite fit it into your budget, why wouldn’t you apply?

This is my attempt to give you a rundown of the scholarship opportunities I know about right now. This is not a comprehensive list, but it’s a start, and if you know of additional resources, please leave a comment below or send me an e-mail and I’ll add them. Some of these are actual scholarships to college for kids with diabetes, and some are scholarships that will help you or your child attend a diabetes event that you might not otherwise be able to travel to.

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First, let me tell you about the amazing work of Diabetes Scholars. Since 2004, the non-profit Diabetes Scholars Foundation has provided scholarships for over 3,000 families to attend the big diabetes meetup of the year, Children With Diabetes Friends for Life conference in Orlando. Many of these families would not be able to go without the assistance of Diabetes Scholars. Diabetes Scholars also provides college scholarships to high school seniors looking to further their education. Get all the details on scholarship opportunities and the application process at
diabetesscholars.org.
 
 
Speaking of college, College Diabetes Network has a terrific list of college scholarships available throughout the USA. These are scholarships that are available from a number of sources, but this page contains a brief description of each scholarship opportunity and a link to its source:
https://collegediabetesnetwork.org/content/scholarships
 
 
Diabetes Hands Foundation and Diabetes Advocates: These two non-profit orgs (DA is a group of, well, diabetes advocates under the DHF umbrella) provide scholarships to a variety of D-conferences throughout the year, including the annual American Association of Diabetes Educators conference, American Diabetes Association’s Scientific Sessions, and Friends for Life. In addition, they created one day scholarships to attend MasterLab, a one-day advocacy workshop at FFL last year, and my guess is they will do the same this year (though I have no inside knowledge). To look into scholarship opportunities, start at
diabeteshandsfoundation.org.
Disclosure: I received a scholarship from Diabetes Advocates to attend MasterLab last year. More about that in a minute.
 
 
The American Diabetes Association, in addition to support received from corporate sponsors (thank you Eli Lilly), helps to provide “camperships” for kids to attend diabetes camps across America. The process is pretty simple, and it’s spelled out at
http://www.diabetes.org/in-my-community/diabetes-camp/financial-assistance.html
 
 
The always-inspiring Team Type 1 Foundation works to provide help, hope, and awesome examples of athletes with Type 1 diabetes making a positive influence on the world. They also provide college scholarships to Type 1 athletes competing at NCAA and NAIA institutions. Their scholarship page has all the information, including requirements:
http://teamtype1.org/gasp/

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That’s the list so far. I know there are many, many more scholarship opportunities out there, but I just haven’t found them yet. Again, if you know about something not mentioned here, leave me a comment or an e-mail, and I’ll add it to the list.

One other thing, and this is personal, so feel free to ignore the rest of this post: As I mentioned above, I received a scholarship to attend MasterLab last year. A couple of months later (or maybe I just noticed it a couple of months later), I read a few things about a person or persons who were unhappy, and felt like the same people are always getting to go to important diabetes events. Well, I felt horrible about that. This was the only thing I’ve ever been given (other than an invitation) to attend a diabetes event. But since then, I’ve wondered if, by accepting a scholarship to attend, I was denying someone else’s opportunity.

So this year, I’m not applying for any scholarships. If I can afford to go to something, I will. If I cannot, I won’t, and I won’t worry about it. This is my decision, and my decision alone, and I doubt it will have any real impact at all. After all, I’m not exactly giving up something I’ve already been granted. And I can’t say that I’ll always feel this way. Each year carries its own concerns and priorities, and I may go back and apply for scholarships in 2016. But for this year, if you want to apply for a scholarship, know that you have one less competitor.

That doesn’t mean I’ll be completely absent from everything this year. I get a lot out of going to diabetes events… I learn a lot, which is something I feel I need, and I can’t discount the interaction that goes on among people I can call friends now. But hopefully, those people are still my friends whether I’m there in person or not. And the fact is, I don’t really attend a lot in person anyway, and a lot has been done over the past couple of years to help get content online for people who aren’t able to attend something in person. In the end, I have an admitted desire to go to everything I can get to. But if I don’t make it this year, it’s not the end of the world.

You? You should go. Educate yourself. Meet people. Form bonds. Ramp up your advocacy. And if you need a little help to get there, always be on the lookout for scholarship opportunities.
 
 
 

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Like these links: College scholarships and the JDRF Research Summit.

January 16, 2015 – 9:49 am

I just have a couple of minutes on a very busy day, but I wanted to let you know about a couple of things that might be of interest. Hopefully, you’ve heard of these already, but if not, consider yourself informed.
 
 
This will matter most to people living in the USA’s Mid-Atlantic region, but these are being held all over the country this year. So if you’re not close enough to attend, look for a similar event in your area soon.

Registration is open for the JDRF Type One Nation DC Research Summit on March 7 in Bethesda, Maryland. Find out more about the summit in previous years by reading this and this.

Free to attend (a donation is suggested), the summit offers speakers on a variety of topics including the latest Type 1 research, JDRF’s continuing mission, how to manage your diabetes through exercise and stress, and much more. As in past years, there will also be a kid’s track and a teen track, so the young ones won’t be bored while all of the adult stuff is going on. In addition to that, there promises to be an exhibit hall full of the latest information and products. I’ll never forget how swamped the t:slim table was last year.

This year’s event will also include two optional morning workshops: One on managing diabetes through sports and exercise with Gary Scheiner, MS, CDE of Integrated Diabetes Services. He was last year’s AADE Diabetes Educator of the Year, and if you haven’t seen Gary do his thing, let me tell you… you don’t want to miss the valuable information he’ll provide.

The other morning workshop will be Taking T1D to School, featuring a panel of specialists who can help give you all you need on planning and preparing for each year as your kid works their way through the school system. Featured speaker for this workshop will be Sarah Butler, MS, RN, CDE, NCSN, Director of Diabetes and Nursing Education for the National Association of School Nurses. In other words, she probably knows her stuff.

The other thing I will say about this get together is the same thing I say every year: If you’ve had difficulty connecting with other people living with Type 1 diabetes, or other families living with T1D, this is the perfect place to solve that problem. Last year, over 800 people attended this event, so if you go, you’re bound to make new D-friends. It’s a laid back atmosphere, usually with plenty of room to stretch out, and everyone there speaks your language. Did I mention lunch is included too?

To get the skinny and register for the JDRF Type One Nation DC Research Summit, go to:
http://jdrfsummit.org
 
 
Diabetes Scholars is accepting applications right now for scholarships! They currently have 11 scholarships to give away to high school seniors planning to attend a four year college, university, technical, or trade school. Some of these scholarships are for as much as five thousand dollars, so if you’re planning to go off to college (or your young adult at home is), now is the time to apply.

To be eligible, you must be a high school senior living with Type 1 diabetes, and a U.S. citizen or permanent resident. Applications will be accepted until April 15, so warm up your typing fingers and get the process started today:
http://diabetesscholars.org/college-scholarship/
 
 
I owe… I owe… it’s off to work I go. That’s all for now. Have a great weekend!
 
 
 

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