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.

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.
 
 
 

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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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Endo woes.

April 28, 2014 – 10:51 am

This story is not all bad. Like all visits with my endocrinologist, I learned something and had a good discussion. But it wasn’t everything I’ve come to expect from these quarterly get-togethers.

My day began as usual: Get up, get showered, get dressed for work, get breakfast. After breakfast, I headed over to my endocrinologist’s office for my quarterly visit.

I get there, get checked in, and about five minutes later, a lab technician takes me back to get my blood drawn for my A1c. Then I’m sent back to the waiting room until I’m called by my endo. Then… about 3 or 4 minutes after I sit down in the waiting room again, the technician comes out with candy in her hand.

“Here… you need this… you’re 51.” Cue the embarrassing feeling of being stared at by aaaalll the people in the waiting room. Both of them (it was early). Not that I know this was really happening. It just felt that way.

What? I had eaten breakfast about half an hour earlier! And that’s when I began to learn that you can be just as embarrassed about low numbers as you can about high numbers.

Sure enough, when my doctor came out to get me, she said, “Well, not only are you 51, your A1c is [I’m omitting this part, but trust me… it’s significantly lower than the last one]”.

“Are you having lots of lows?” she asked. And I answered, “Well, you know, not too many, blah, blah, blah”. In other words, I lied. Sorry Dr. Pao, if you’re reading this. But you probably already know anyway.

In fact, I have been having (at least) a couple of lows every week. Usually in the 40s and 50s. I’d really gotten my focus to extreme control. In other words, I hated to see even a 120 mg/dL on my meter. A number like that would drive me crazy. So I’d work hard on getting that down to under 100. I worked hard on getting all of my numbers under 100. Of course, that kind of control puts you much closer to the hypoglycemic part of the blood glucose spectrum. Add in additional workouts to get ready for my bike ride and (hopefully) a triathlon, and now I’ve got even more to worry about. I have to write this out, so I can admit it and get it off my chest: I’m too low all the time.

She mentioned something else that’s stuck with me since then. I told her how I’m tired all the time, like really tired, even while working out, which I’m not used to, and which scares me a bit. And she said basically, yeah, when your glucose is low all the time, you’re tired all the time, and your muscles are sucking up all that sugar right away, even if you’re taking on extra for your workout (mentally, she’s probably thinking “Duh!”). So it’s okay for me to have 115 or 120 or 130 on my meter on a regular basis as opposed to 75 or 65 or 55 on a regular basis. Maybe (and I’m extrapolating here), running higher than I have been will help rejuvenate me a bit. Maybe I haven’t realized just how energy-sapping all those lows have been, cumulatively, over the past three months.

So I’m going to have to change my internal messaging to allow myself to think it’s okay if my meter reads in triple digits. Now, I realize how some People With Diabetes who are reading this must think I’m the luckiest guy in the world, and they probably wish they had my stupid problem, and I get that. But getting the numbers in a good range is tough, regardless of which side of the range you start from. This is my problem. It’s not common among PWDs, but it’s a problem and I have to fix it.

We’ve determined that my basal rates were too high, and I’ve ratcheted down every one of them at least a tenth of a unit. Already, I feel like I have a little more energy, though the real verdict on that will come over the next few weeks. On the bright side (additional testing), my kidneys are still functioning well, and my thyroid appears to be humming along nicely too.

In the final analysis, this visit with my endocrinologist is the first one I can remember with this doctor where I didn’t walk away feeling great. My fault? In this case, yes. I feel like I let my doctor down. I also resent feeling that way. But why? I think it’s because—and I think many PWDs feel this way about their HCPs—sometimes incorrectly, sometimes not—having to please one more person just bothers us more than we care to admit out loud. We just don’t want to take on the burden of pleasing one more person. Or in some cases, even one person. We’ve got enough to deal with already.

In my very personal case, I also need to remember that my endocrinologist has helped me a lot. She’s done a lot for me. So given that history, it’s really in my best interests to be open to her advice. But even if that weren’t true, I still have to concentrate on me. Making my numbers work for me. Making my numbers work for me means I’ll be in a place that ultimately makes me happier, and without thinking about it, will make my endo happier too. So as always, yesterday doesn’t count anymore. It’s only information I can use to make today and tomorrow better. I’ll let you know how successful my efforts are in three months.
 
 
 

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Like these Friday links.

April 25, 2014 – 7:54 am

There’s a lot for me to talk about this Friday, so let’s get down to it:
 
 
– Provided I can get through rush hour traffic and make it to Washington, D.C. after work today, I’ll be sitting in on the DSMA Live social media meetup at the Diabetes Sisters Weekend for Women conference in our nation’s capital. The event is free and open to the public. If you can’t be there, you can listen in here. Don’t forget to follow @DiabetesSocMed on Twitter, and look for all the virtual conversation using the #DSMA hashtag.

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DHC2014
– Thanks to the inimitable Scott Johnson and others, the Diabetes Hope Conference will be happening again. According to the official conference website:

“Through the magic of GoToWebinar and HD Faces, we’ll live stream all of the virtual panels and take questions live from the audience via Twitter and the hashtag #dHopeConf.”

The conference takes place from noon to 3:00 p.m. on Tuesday, May 20.

A bunch of your favorites will be on the panels. The content looks to be timely and important. Over 250 people joined the conference last year. Make sure you’re one of the multitudes attending the 2014 edition. So check out the conference agenda, do your virtual RSVP (here), and for heaven’s sake, participate!

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– Lizmari writes over at The Angry Type 2 Diabetic, and she wrote an interesting post about patient dignity back on April 11. She finishes with these words:

“In the end, the person who’ll end up costing more to a society is not the person with diabetes: it is the diabetes bully.”

Read the words leading up to that finish, and you’ll find a few diabetes truths in there to chew on.

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– On a non-diabetes note, Libby at I Have The Sugars wrote probably the best thing I’ve read yet about the Boston Marathon tragedy from a year ago. In it, she talks about how the bombings affected her, and what she carries forward from those scary, eventful days last Spring.

I was hanging on every word of it, and I know you will too.

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Finally, a quick reminder that I’ve updated the Blogs Worth Your Attention listed on the left side of this page. I took out three who aren’t posting anymore, and I added eight new ones that weren’t there yesterday. This is a long overdue update. All of those D-blogs are worth your time, and they will inspire you.
 
 
Enjoy your weekend… more about my recent endo visit (not great, my fault), and something that absolutely breaks my heart, coming next week.
 
 
 

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Back in the day.

April 23, 2014 – 1:10 pm

Every once in a while I think back to the initial days before and just after my diagnosis. Dr. Mowry correctly diagnosed me with Type 1 diabetes at the end of January, 1991. After a few days in the hospital and some quick diabetes education, I was off to handle this chronic condition on my own. This recent post made me think about that diagnosis, and mostly, about my first few years living with Type 1.

One of the first things I remember thinking about diabetes was, after they gave me my dosing instructions (something like 26 units of Novolin 70/30 insulin in the morning, 22 at night), doing the quick math to determine I was going to be injecting myself 730 times every year, and 732 during leap years. That was my wake-up call… that was the first moment I knew for sure that this was different.

The diabetes educator I met with in the hospital was the first and last diabetes educator I’ve ever met with. No real reason for that, other than no one else ever said to me, “You should go see a CDE”. So I never did.

I remember getting the “five years to a cure” pep talk while I was in the hospital. I didn’t believe it. I remember giving others (mostly my Mom and the rest of the family) this tidbit of information in a sort of sound bite fashion, mostly so they didn’t worry, and so I didn’t get their pity. I still don’t know just how to handle that from people. But deep down, I knew from the beginning that my diabetes wasn’t going away. Nobody was going to be able to repair my broken pancreas.

I did read a lot about diabetes early on, to find out as much as I could about the disease. But I didn’t really know where to look for the latest about treatments, technology, and research. So, when I learned everything I thought I could learn about diabetes in general, I stopped reading. I might have picked up a JDRF or ADA publication from time to time in my doctor’s office. But how much of that can you read while you’re waiting? And when I was newly diagnosed, it didn’t occur to me to get any of that information at home. Besides, it all seemed so clinical back then. Eat right, exercise, take your insulin. Rinse, repeat. After I read that so many times, I just mentally turned it off.

I was going through a very stressful time at my job in those first few years. In a way, this was both a blessing and a curse. A blessing in that being so involved with work (about 60 hours per week), I didn’t have time to be angry or feel sorry for myself. I just had to move from task to task… that’s all I had time for. And therein lies the curse: Diabetes took a back seat from day one. If I was alive, I thought I was doing fine. Until my next A1c result. After the result came in, I’d feel bad for a couple of days, and then it would be forgotten until the next trip to the doctor.

Making so much time for the non-diabetes part of my life also meant that I wasn’t taking time to get up to date on drugs and therapy. I started my D-education in the hospital at diagnosis, but I didn’t get a follow up on anything for another 11 years. So, eleven years after diagnosis (2002), I was still injecting the same insulin at the same time every day, in the same amount. Regardless of my diet or level of exercise, never anything different. I knew that exercise could lower my glucose, and too much food could raise it, but it never occurred to me to make adjustments to my insulin dosage as a result of either of those. No one ever told me I could or should do that. And I couldn’t understand why my A1c was always crappy. How crazy is that?

I think I really could have used a mentor at that point in my life. I’m not sure how I would have received that mythical person then, but obviously, I know now how important a mentor can be as an educator, a cheerleader, a sounding board, and someone to help talk you off the ledge when times are tough.

Every time I think about it, I’m really blown away at my utter lack of diabetes knowledge in the first decade-plus of my journey with this condition. If you’re newly diagnosed, I hope you find that mentor. I hope you stay as up-to-date as possible on the latest medicine, therapy, technology, and research. Don’t forget that compared to your day of diagnosis, you’re pretty healthy right now, and you probably feel a lot better too. Don’t ever give up. Don’t ever stop learning. If this old dog can learn new tricks 23 years after diagnosis, I know you can too.

Don’t forget to pay it forward. Someone out there is right where you were in those first few days or weeks or years. Help make their first few steps sturdier, easier, more sure. JDRF has a mentor program that will allow you to help newly diagnosed PWDs feel less alone. Of course, when you need help, don’t forget to reach out to someone who can help you navigate stubborn BGs and difficult emotions. We all need help from time to time. In the meantime, remember to enjoy the vibrant, fulfilling life you were always meant to live, even if diabetes won’t go away. You deserve it.
 
 
 

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