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.

The inevitable downslope.

June 6, 2013 – 9:34 am

DSC00849

This is why changing infusion sites in the evening worries me a little.

I changed sites last night around 8:30… Great. I was primed and ready for the #DSMA Twitter chat. About halfway through the chat, The Great Spousal Unit brought me a small bowl of strawberry ice cream with fresh strawberries on top. There were more strawberries than ice cream, but when they’re fresh, I don’t mind at all. Now, where was I? Oh yes… the infusion site change.

So often after site changes, I’ll have a… What do you call it? A phenomenon? An anomaly? An unexplainable variance in The Force? It seems as though the site isn’t working at all for a while, which is why I got a high alarm around 11:30 while I was fast asleep. I’ve been through this kind of thing before, so I knew better than to do a correction bolus at that time. And my BG just kept on climbing, up into the neighborhood of 250 mg/dL at around midnight.

From that point on, however, I started dropping. Again, this is without a correction bolus. Certainly, the ice cream and strawberries had lost a lot of their oomph by then. But I just kept getting lower and lower until I was awakened by a low alarm at around 5:00 a.m. No big deal, because that’s when I get up for work (if I don’t go to the gym first). But I just don’t understand why, at least half the time I change sites, all of the insulin I’m pumping seems to be worthless until all of a sudden it’s not worthless anymore. And then it makes up for it with a vengeance over the next few hours. I’ve seen others write about this, so I know I’m not a weird statistic. But I don’t have a scientific explanation for it yet.

Just to be sure it was the new site and not the dessert that caused my glucose to skyrocket last night, I may have to try the ice cream and strawberries again this evening. You know, just to be sure.
 
 
 

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Sometimes, I just hate getting blood drawn.

June 5, 2013 – 10:37 am

Excuse me while I vent a little…

I had to get blood drawn today for the clinical trial I’m participating in. Instead of going all the way down to Virginia to get it done, the team there sent me a lab slip so I could get the work done here. Fine so far, right?

So I go into the local corporate-owned lab processing place (are there any mom and pop lab processing places?) and gave them the lab slip that had been scanned and e-mailed to me. In the office there was me and three lab technicians. That’s where the trouble started.

“This says ‘Virginia’ on it… I don’t know if we can do that here”. Well, yes, you can. You’re a multi-state organization, which is why they chose you to do the work (I live in Maryland, for those who don’t know).

“This doesn’t have your name on it, just your initials… I don’t think we can do this without your name on it.” They’re trying to keep the study participant information as private as possible, I think, and I just let you look at my driver’s license, and by the way, the form says “patient’s initials” where my initials are.

“Okay, we just need your name, date of birth, your phone number, and your address.” Really? Do the words “Patient Privacy” mean anything to you? Actually, that’s only what I was thinking, it’s not what I said. I eventually gave it to them to keep the process-at-a-snail’s-pace moving.

What I said, eventually, was: “Look, I’m not going to come in here out of the blue with a forged lab slip because I like going around and getting poked in the arm all the time. No one would do that.”

Ten minutes later, the blood was drawn and I was on my way. After answering questions like “did we get your date of birth?” (Yes) and “This goes to Johns Hopkins, right?” (No, University of Virginia). Start to finish the process took about 50 minutes. And I was the only patient in the place.

I was a retail manager in a previous life, and I know this is a different setting, but let me put it this way: I never believed in the notion that “The customer is always right”. My feeling was, the customer should never be made to feel that it’s their fault if they’re wrong. If I hand you a piece of paper that doesn’t look like every other piece of paper you receive (even though it does have your company’s logo at the top), let’s work together so I can ease your fears and you can ease mine.

If we had worked together, the whole episode would have taken less time, and you and I probably would have had smiles on our faces at the end of the process. If you even care about that kind of thing. Which, maybe, you don’t.
 
 
 

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Hard decisions.

June 3, 2013 – 9:42 am

You may have read in the last few months (because I’ve been kind of bragging about it) about a triathlon that’s on my schedule in just a couple of weeks. I’ve completed two triathlons before, both two years ago, and I’ve been excited about the idea to add another one to my list.

But it’s not going to happen. Over the weekend, I made a heartfelt decision to cancel my participation in the event this year.

Making this decision, and writing about it right now, is pretty emotional for me. I’m not a quitter. But I feel like a quitter, and thinking about it that way is particularly galling. I suppose I could just go out there, try my best, and somehow get myself through the event. But finishing like a weakling is not my style. And I think it would take everything I have to finish this time. If I could finish.

In reality, there are a number of reasons why I’m crossing this off my list. Only part of it is that I’m not in the kind of shape I would like to be in to swim, bike, and run over two hours. Part of why I’m not in the best of shape is because of how often I was sick over the first four months of the year. It was May before I could get on a steady schedule that would keep me getting stronger up to this point.

Being busier is a reason too, but not a good one. I’m still getting used to being busier than I have in both my work and personal lives in the last ten years. That’s a good thing for me. Being involved is good. But it also means that I have less time to hit the gym, or the road.

But ultimately, it comes down to the most important factor. When you’re involved in a relationship with someone, and you commit your lives to each other, you’re saying (among other things) that when you really need me, I’m going to be there for you. I got out and rode my bike for over an hour on Saturday morning, then came home to help The Great Spousal Unit clear away debris from two large tree limbs that had fallen in our yard. It smashed a lattice wall we had constructed some years ago, and took out a bench we had sitting there too. The cleanup required us to do about five hours of work in the hot sun before making a trip to the county dump to get rid of the lattice, the bench, and a couple of other things that needed to go.

If I had finished my ride and then run for about an hour, like I had planned, it would have meant that Maureen would have been left clearing away that debris all by herself. Because by the end of that ride and run, I would have been useless for the rest of the day. And the thing is, I’ve been doing that kind of thing to her a lot this Spring. Traveling to conferences and leaving her at home. Letting her do the yard work while I went to the gym. Granted, you’re going to do some of that when you’re busy, and when you’re training for an event that requires more than just a little stretch beforehand. But I knew that it was getting to be too much for her. I also heard her the hundred times when she suggested that I should call off the triathlon this year. Partly that was out of worry for my welfare, I think; and partly that was out of concern that she wasn’t getting enough help (let alone enough attention).

So while there are probably about a dozen reasons for me to call off this event, my spouse of almost twenty years is the one that tipped the scale. If I feel better in a couple of weeks (I gave blood again on Friday morning and Saturday’s work was especially tiring), I may make a last minute decision to participate. But right now, I’ve got to come to grips with being mad as hell at myself today, then get back to my reality tomorrow. Sometimes you do things you don’t want to because it’s right for someone important, and often that someone important isn’t even you.
 
 
 

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And now, back to our regularly scheduled research.

May 31, 2013 – 9:44 am

The clinical trial that I’ve been participating in since April has officially resumed after a brief hiatus.

The trial is designed to measure how patients handle their glucose levels while interacting with a specially-designed website. The purpose of the website is to produce data and information to patients based on daily logging of BGs, meal intake, exercise, and other factors. I’ll be uploading Dexcom™ G4 data every day too. The main goal of the study is to “improve glycemic outcome”. A lofty goal, and let’s hope it’s achieved. It’s really much more than I’ve just described. If you really want to find out everything that it’s about, check out the full description at the clinicaltrials.gov website:
http://www.clinicaltrials.gov/ct2/show/NCT01767831?term=ibolused&rank=1

So anyway, after taking a break so some web development issues could be ironed out, we’re back at it. I think the hardest thing about starting up again is going to be learning to swim with the Dexcom™ stuck in my gut. Those turns and pushing off the wall will feel funny at times, but I’m sure I can get over it. Besides, I only have to swim another two weeks anyway to get ready for my triathlon, and then I can take a break from it.

As before, I’ll try to give an update every week or so to let you know how it’s going. There’s only so much I can reveal while the study is ongoing, but I’ll let you in on as much as I can. Once the study is published, I’ll be able to talk about it in full if you’re still interested.

If you want to find out more about the kind of studies taking place out there, just go to the clinicaltrials.gov website and put Diabetes into the search box. A recent search found 9,688 separate entries.

I’m glad we’re starting this up again. And again, I hope it’s a big success.

P.S. This study is still recruiting participants! It’s a great way to get your feet wet in the clinical trials swimming pool, so to speak. Also, it’s a great opportunity to try out the Dexcom™ G4. If you think you might be interested in participating, send an e-mail to: mkm6x@virginia.edu
 
 
 

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DSMA May Blog Carnival. Strengths and Weaknesses.

May 29, 2013 – 9:34 am

Strengths and weaknesses… hmmm, let me see… I know they’re in there somewhere. Everyone has them. Why is it I have more trouble finding my strengths than I do finding my weaknesses?

Maybe that’s because I’m not really trying to find my strengths. I’m trying to find what you think my strengths are. That way we can all agree and be happy. Plus, like a lot of people, I tend not to focus on my strengths, preferring instead to focus on my weaknesses, in the hopes of (hopefully) making them go away.

So where was I? That’s right… strengths. Diabetes strengths. Here’s one for your consideration:

I like to believe that I’m a lot stronger than you might think when you see me in person. Stronger as in tougher. Able to get up from a terrible low in the morning, and go to work all day. Able to fight with my prescription provider for my regularly scheduled meds, hang up the phone, and go off to my appointment at the endocrinologist. Able to ride 100 miles on a hot day in June, collapse, and head back to the gym two days later. Able to handle multiple daily injections for 19 years before going on pump therapy, in addition to all of the finger sticks that come in 22 years with diabetes.

I guess you could call it perseverance as a strength. That’s something that I think all of us living with diabetes possess. Because really, do we have another choice? Sometimes this thing will try to knock us down, and sometimes it will, but the real victory is in getting back up and continuing to live meaningful lives, despite pump tube occlusions or a crazy metabolism that decides to suddenly kick in six hours after a hard workout and drop our BG into the 40s (or the 2s if you’re outside the USA), or a hemoglobin A1c that doesn’t reflect how amazingly hard we’ve worked in the last three months. Living well despite all that… that’s what I mean by strength.

Weaknesses? I’ve got ‘em. They’re not very fun to identify either.

I admit that I have a weakness for salty carbohydrates… chips, popcorn, stuff like that. Needless to say, carbs aren’t the best thing for People With Diabetes. Also, I’m not big on logging data. If logging data were as easy as breathing, I’d be the best logger ever. But since it’s not, I’m not good at logging data. Of course, the good news is that by admitting what my weaknesses are, I can get to work on being better at cutting out the carbs and uploading the data.

But whatever our weaknesses or our strengths are, two things remain important. First, that we continue to keep doing our best, showing an example for other PWDs by showing that nothing can keep us down. Second, we need to continue to support each other as we try to come up from our lows and come down from our highs. Trust me… you are an inspiration for someone. That’s a strength, and it’s even more of a strength the longer you persevere. Stay strong.

This post is my May entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/may-dsma-blog-carnival-3/
 
 
 

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