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 diabetes game.

April 24, 2012 – 2:34 am

Step right up, Mr. and Ms. PWD! You too can take part in a unique challenge involving skill and daring… it’s the game the whole family can play… Diabetes!

Our first round is the diagnosis round. In it, you’ll go through the difficult first few weeks, before you even know you have diabetes. You’ll be thirsty all the time. You’ll go through the lightning round where you try to make it 45 minutes between trips to the bathroom! You’ll feel sluggish, and you might even lose a few pounds a few weeks. At the end of the round, a medical professional will confirm that you’ve got a disease for which there’s no known cure. But watch out for our two whammies– ketoacidosis, and doctors who want to make sure you know about all of the “risks of complications that you need to be aware of”.

If you survive the diagnosis round (literally), you’ll move on to the maintenance round. We’ll test your stamina (and your psyche) with new terms like hypoglycemia and hemoglobin A1c. You’ll go toe-to-toe with well meaning individuals who refer to you as a ““burden on the healthcare system“, and insurance actuaries who determine how many supplies you need to live based on their company’s or your employer’s profit & loss situation.

Still in the game? If you’re one of the lucky contestants who makes it through the maintenance round (literally… but really, you’re always in the maintenance round), you can reach the stage of diabetic maturity. You’ll find the diabetes online community, where you’ll encounter additional players in this game. People just like yourself. Members of the DOC will provide much needed validation, plus valuable information you might not find anywhere else. You might even get a chance to blog yourself, volunteer, or mentor others through the various stages of the diabetes game.

Make it through everything, and you’ll be eligible to win our grand prize! A chance to keep on living. A chance to take advantage of advances in care and technology. A chance to hang in there until a cure is within reach. NOW is the time to celebrate all the milestones in our life. Every birthday, every diaversary, even if they’re not our own, is worth its weight in gold. We’ve earned them all.

Are you ready contestants? Here we go…

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Me and my pump.

April 23, 2012 – 11:26 am

The pump has been with me for a little over 2 years now. Officially, it’s a Medtonic Minimed Paradigm® Revel 723 pump. Unofficially, I have a love-hate relationship with it. Actually, you can make that a like-hate relationship. But that’s not as bad as it sounds.

When you add up the score, it’s not all that bad:

Pros
First and foremost is the convenience factor. I can go just about anywhere (not the water) with it and get insulin when I need it. A good example for me is my too infrequent day trips to New York. Instead of injecting a great deal of Lantus and hoping that my BG stays in range all day, or taking along a flexpen with something fast-acting and then looking for a quiet place alone from time to time (try finding that in Manhattan), I have what I need resting on my belt. Love that convenience.

It does help me keep my numbers in line a little better, but my numbers were pretty good for about a year before going on the pump. What the pump does is make it easier to manage my numbers. When I was first diagnosed with type 1, I was put on a twice per day Humulin 70/30 product. Same dosage every day, no matter what. That lasted for about 14-15 years. Then after having a difficult time handling lows, I was introduced to Lantus. It changed my life. For about two years. After that, I started to have additional issues with lows in the morning and highs late in the day. So the answer to that was to cut down on the Lantus and use a fast-acting insulin (Apidra) for boluses prior to eating.

By the way, this was the first time I’d heard about the word “bolus”, or even the idea of adjusting insulin dosage based on my BG and my carb intake. About 18 years into my diabetes. Until then, it was the same dosage, same time, every day, no matter what.

The next part is my fault. I found the bolus idea to be too much of a nuisance during the day (crazy, I know). Particularly because I work in a conservative environment where appearing to be out of the norm has, in the past, sometimes been seen as weakness. So I only bolused with the fast-acting insulin at night, at home, where only my family would see it. At work I still check my BG before lunch in a separate room with no windows. People at work know about my diabetes. Some of them have freaked out about it at times. Or maybe I’m still a little unsure about giving them a reminder about it every workday.

I eventually started looking into insulin pumps about 3 years ago. I decided I wanted to check it out. I loved the idea of having continuous delivery, and the fact that I could program everything in, even variances to my routine (I’m talking temp basal adjustments). I finally got hooked up with the Minimed after I started with my super Endocrinologist, who has been great.

Cons
The hardest part about wearing a pump is that you are wearing a pump. It is attached to you, 24/7/365. You can’t understate that. But let me be clear in saying that you can get used to it. And if you’re not fond of giving yourself multiple injections per day (never a problem for me), I guess one stick every few days is not so bad.

I am not a CGM (continuous glucose monitor) wearer. I tried it for a while after going on the pump, but there were two big reasons why I gave it up. First was the annoyance of having another thing attached to me all the time. The other was that I’m very concerned about real estate (??). I’m starting to read about some of my fellow pump-wearing PWDs who are finding that some sites have scar tissue after being injected many times. I’m interested in preserving potential sites as long as I can, so while a CGM might help me get real-time BG info, it’s not yet worth me destroying extra real estate. Maybe later, but not now.

In the final analysis, I am happy to have the pump. I am very happy that I have an employer that cares enough (I’m being honest here) to cover my pump, and pump supplies, and strips, and lancets, etc. It makes me sick to see people lose their benefits and think, “what if they or their family has to deal with this disease on their own?”. And I’m looking forward to the improvements that technological advances will bring to the market. Maybe the real estate issue won’t be such a big deal in the future.

And one final thought: This is just my blog… it’s very much a personal journal of my life with diabetes. Every pump and CGM decision is a personal one. You must decide for yourself. If you’re thinking about whether to take the plunge, get advice, not opinion. Get the facts, not a viewpoint. I wish you the best of luck, and the most of happiness.

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Recipe!

April 21, 2012 – 8:40 pm

Burger
Okay, it’s not a beautiful picture, but it’s my first one, so give me a break. And I know I’m a slob with the mustard. Always have been.

The burger is not my recipe, actually… but one that I like a lot. Kind of an alternate take on the regular grilled burger; in this case, with lamb (that Maureen found on sale at the grocery today!). The recipe comes from Sam the Cooking Guy in San Diego:

http://www.thecookingguy.com/cookbook/recipe.php?id=418

This recipe works great with ground lamb, bison, or even pork, though the pork will really up the fat content. With the meal we included cole slaw and a little bit of potato salad.

Total estimated carb count: 49 grams (this counts the low carb beer in the background)
Take out the bun and the beer, and your carb count goes to just 18 grams! Or go with the cole slaw only and no bun, and you have no carbs.

Disclosure: I have received nothing from Sam the Cooking Guy or anyone else for posting this recipe. I just saw him do it once, thought it was easy, and I liked it. Carb counts are estimates only. Check with a registered dietician to find out what a healthy carb count is for you.

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DSMA Blog Carnival. Ideal Diabetes Support Group?

April 19, 2012 – 10:22 am

This blog is so new I probably shouldn’t be doing this, but I’ll give it a try anyway. The April DSMA Blog Carnival topic is:

Describe your ideal diabetes “support group”? What would you discuss?

Both of these questions are hopefully answered below.

My ideal support group… well, first of all, it would exist (more on that later). Assuming it does exist, I would want my ideal support group to have 4 qualities:

1. Inclusion. No haters in this group. I know that people don’t always look at the world in the same way, but support means accepting someone on their terms, not mine. Same for conversation. Everyone needs to feel free to be themselves.

2. A sense of humor. Diabetes is a daily struggle for all of us. Not taking ourselves too seriously allows us to focus on what is really important (and who is really important), when it really matters.

3. Flexibility. Let’s face it: things change, people change, diabetes changes all of us. Having the same agenda or focus at every get-together is the kind of rigidity that turns me off. Being flexible means keeping things new and fresh rather than old and stale. Flexibility means acceptance to change, and even embracing change that helps a group’s evolution toward a more perfect union.

4. Goals. Read: Advocacy. The primary goal of any support group should be support of group members, right? If that’s your only goal, okay. But you’re not part of my ideal support group anymore. Because there are always people who need more support than ourselves (well, almost always). My ideal group sets goals that will help make the world a better place for PWDs. That’s not reaching too far, is it? Okay, goals need to be attainable. But I would really like my group’s support to be larger than just the group.

That’s my ideal support group, and at least a basis for discussion. But I have to admit that I’m just guessing here. I’ve never attended a support group meeting since my diagnosis. In fact, in 21 years with diabetes, I think I’ve met maybe 15 other diabetics in a a live setting. And about 10 of those were at a local event for adults with type 1 a couple of months ago. I only found out about that because I had volunteered with the local JDRF chapter the week before.

To be honest, I share much of the blame. I haven’t been a particularly social creature in the past (I’m getting better, I think). Also, I was diagnosed and spent the first few years with diabetes in one city, then moved to another city where I knew virtually no one. I haven’t signed up for a lot of JDRF or ADA walks or rides. And, for various reasons, I’ve pretty much shared my D-story with people on a need-to-know basis.

I haven’t attended events, lectures, presentations, or conferences, mostly because, until recently, I didn’t even know these things existed. As it is, these things rarely happen in my part of world anyway. Wait a minute… Hey! I think I have our first discussion topic! Our first goal! Who’s with me? Let’s goooooo!!!!!

Author’s note: Looking for my first support group meeting… more to come.

This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/

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A post about posts.

April 18, 2012 – 11:48 pm

I don’t know if I can handle Wordless Wednesday… I’m too much of a writer for that. Let’s see if I can just direct you to a couple of great posts I found today, with a minimal amount of explanation:

Mike Hoskins talks about lows in public. The public nature of hypoglycemia adds an extra, unwanted element. Find out how it affects Mike at The Diabetic’s Corner Booth.

And Scully got out to a local Crit race (I’m sure she knows what that means) Tuesday, and she talks about “Preparing her Diabetes”. I’m always fascinated by an athlete’s story. Read it at Canadian D-gal.

Enjoy!

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