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.

How busy is YOUR weekend?

February 1, 2013 – 11:01 am

I know, I know… Super Bowl. Here are a few additional items to think about this weekend:

– Diabetes Art Day has moved, from the fall to this Monday, February 4. So gather all of your D-Art supplies and create something inspirational. Then post it on the Diabetes Art Day site at
www.diabetesartday.com
Trust me… as long as I’m participating, you will never have to worry about creating the worst submission.

– Have you seen the premiere of the new NBC show Do No Harm? No? Cara over at Every Day, Every Hour, Every Minute did, and she found a host of diabetes-related inaccuracies and inconsistencies. She’s asking you to take a look for yourself, and if you feel the same way, and it bugs you, write about it. Or tweet about it. Or do whatever you can to smash those diabetes myths that seem to be all over this show’s first episode.

– Maureen and I are off to the Children With Diabetes Focus on Technology conference in Washington, D.C. this weekend. If you’re unable to attend, I’ll try to give you some of what I learn at the conference next week. To find out more, check out
http://www.childrenwithdiabetes.com/activities/dc2013/
 
 
Enjoy your weekend… Go #Ravens!
 
 
 

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I waited until today to write this post.

January 30, 2013 – 11:30 am

I don’t know the reason why, really.

We were all sitting around last night, The Great Spousal Unit and The Live-In Niece and I, discussing it. I remember I said that the same thing happened this year that happens a lot of years around this time. In the beginning of January, I start to think about it, and by the end of January it’s somehow slipped off of my radar. Only this year, I remembered again, a day in advance.

And Maureen, in her psychology-major voice asked, “Why do you think that is?”. I don’t know… I’m forgetful? Absent-minded?

“Yes, you are… but I think it’s more than that.” You mean like I’m avoiding it somehow?

“I don’t know. Maybe. You always seem to dislike dealing with things that are unpleasant.” Yeah, well, who doesn’t?

But she has a point. I don’t like reliving that day in my head. It’s probably not the worst day of my life, but it’s definitely in the top 3. Or top 2. Or maybe there’s 1 and 1a. But when I do relive that day, I get sad, and angry, and then mad at myself for making a big deal of it and letting it affect how I feel in that moment.

So how do I deal with it this year, in a semi-public forum? Do I celebrate, like I try to do for my birthday? Do I curse the course of events and go around with a scowl on my face all day? I think either, or both, would be appropriate.

Instead, I decided to sit down and pen a letter.
 
 
January 30, 2013
 
 
Dr. M____,

Twenty-two years ago today, you correctly diagnosed me with Type 1 diabetes. From that moment forward, my life has changed in ways I couldn’t have imagined then.

First of all, let me say thank you for taking the time to investigate what was obviously wrong with me during the two months leading up to that point. There were two other doctors who couldn’t be bothered to do a blood test or take a urine sample. If you couldn’t be bothered either, well… I don’t know how I would have ended up.

Second, thanks for staying on me those first few years. I think you could have been a little more forgiving about my dietary choices and my lack of BG logging diligence, but you did instill in me a feeling that this is my diabetes, and I live with it every day. I own it.

Finally, I want you to know that I’m doing well these days. My wife and I have had a good life in Baltimore for almost 19 years. Today, instead of twice-daily injections like when I was diagnosed, I’m hooked up to a Medtronic Revel™ insulin pump. My last A1c came in at 6.2. I’ve completed two triathlons, and hopefully a third this year. And I’m writing a blog about my diabetes, talking about my daily experiences, investigating diabetes-related issues from time to time, and advocating for others like me.

Every journey starts somewhere. My journey with this disease began in your office back in January, 1991. I can remember it like it was yesterday. But that’s only the beginning of the first chapter. Subsequent chapters have had their ups and downs, but there’s still a lot more of this story to tell. I think it will be a long time before the final chapter is written. I hope you’re well, and I hope you understand how lucky I was to have connected with you so many years ago.

All the best,
Stephen
 
 
 

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January DSMA Blog Carnival… New Year with Diabetes.

January 29, 2013 – 10:44 am

Ohmygosh! It’s almost the end of January, and I haven’t completed my post for the January DSMA Blog Carnival. If you’re writing about your diabetes too, you should participate. Just write a post on the subject and link to it on the DSMA Blog Carnival page.

This month’s blog carnival topic asks us to fill in the blank:

New Year with Diabetes : Striving for _______ in 2013

To be honest, I could have taken the easy way out and used my January 2 post this month. But that post really talked about my life overall, and what I would like to accomplish this year to be a more well rounded person. Since we’ve still got a few days left in January, I’d like to narrow down my focus to just diabetes here.

I think what I’m striving for in 2013 is a continuation of what I started in 2012. I want to get out there and get engaged with the rest of the world. A few times in the past year people have asked me about my story… you know, the “tell us all about your diabetes” story. Each time, I found myself describing this sequence of events where I was diagnosed, went off to live my life, and kind of lived in the woods with my diabetes, so to speak. Not doing anything to help anyone, not learning anything new, not knowing much beyond what I knew on the day of diagnosis. But since last year, I’ve been trying to change all that.

I want to find my way out of the woods and into a place where I can get some clear footing with my condition. I want to learn about new therapies, new ideas. Converse with others going through the same issues and share valuable information, because together we are worth more than the sum of our parts.

In 2013, I’ll be striving to get my diabetes out into the sunshine, and I’ll be trying to help others do the same. I hear it’s warm out there.
 
 
This post is my January 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/january-dsma-blog-carnival-2/
 
 
 

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My week with Celiac… Day #7

January 26, 2013 – 9:24 pm

No, I have not been diagnosed with Celiac Disease.

Celiac is another autoimmune disease that occurs in about one half of one percent of the general population. However, according to JDRF, about 1 in 10 people with Type 1 Diabetes is eventually diagnosed with Celiac. According to ADA standards just released, as many as 16 percent of Type 1s could be living with Celiac. During this week, I’ve been living and writing about the gluten-fee life from the perspective of someone newly diagnosed with Celiac Disease.

Muy Muchas Gracias to Nikki at Celiabetes who has been a tremendous resource, providing very valuable information and feedback for this series.

Wow, I can’t believe this week is almost over. It’s been an eye-opener, in a number of ways.

Today, we decided to try to go out. Since it’s so bloody cold here these days, we opted for going out to lunch rather than going out to dinner. How do we prepare, how do we handle eating gluten free in a restaurant environment? I’ll have to refer to Nikki one more time:

“You’ve probably noticed that there are lots of sit-down restaurants that have gluten free menus nowadays. The larger the chain, the more likely it is. Or the more expensive it is, the more likely it is. The key here is to tell your server right away that you have a “gluten allergy” and cannot eat gluten. Even though Celiac Disease is not a gluten allergy, it’s the easiest concept for other people to understand. I love PF Chang’s, Outback Steakhouse, Chili’s, Wildifire/Bonfire, and Chianti Grille.”

Nikki also says that fast food joints are almost all out of bounds for the GF eater. But Wendy’s and Chipotle do have options if you also inform them of your “gluten allergy”.

The Great Spousal Unit and I decided that we wanted to try something local. So we went to The Flying Avocado. One of our favorite places to get lunch, it’s a pretty healthy eatery anyway, and we thought we would try to see what we could do within the confines of their menu.

When we went to the counter to order, I just said “Hey, I have a gluten allergy… I can’t eat any gluten. Do you have any recommendations for me?”. The person behind the counter said, “Hmmmm… let me check”. She went in the back for a minute, and when she came back, she said that they didn’t have any gluten free wraps left, but they had some gluten free bread. Awesome! I didn’t really expect to get a gluten free meal without getting a salad, so this was a surprise. It was a good sandwich too… bacon, lettuce, tomato, and avocado. I had a side salad with it, and if you look closely, you’ll see some GF lentil chips in a plastic bag that we brought from home. And no, I didn’t put the dressing on my salad, and my sandwich was plain, without mayo or anything like that.

DSC00558

Could I have been subject to some cross-contamination? Maybe. But to be honest, I was so excited to be offered gluten free bread that I didn’t see on the menu, I forgot to ask about their procedures in the kitchen. Simply put, it was delicious. If you live around here, I would definitely recommend this place.

All in all, I’d say I was extremely lucky in my dining out. I’m not sure I’d have done as well anywhere else locally.

Hey, I also promised to write about my new favorite cookies. That’s right– they are my new favorites… and they are gluten free. Trader Joe’s Gluten Free Crispy Crunchy Chocolate Chip Cookies are just as described. A very nice treat. Two cookies have 18g of carbohydrates.

DSC00561

A couple of other items from this week:

– I think I was a little tough on the Kinnikinnick brand chocolate chip muffins yesterday. I’m not a big fan of chocolate chip muffins, so that probably had something to do with it. Kinnikinnick seems to go out of their way to do gluten free and do it right, using proper processing and inventing new gluten free options all the time.
 
 
– In the Day #5 post, I had a photo of guacamole that I made next to a huge basket of lentil chips. Not sure if I made it clear that I did not eat that entire basket of chips. It was shared among four of us in the house that night. I love savory snacks, but that’s a lot even for me.
 
 
– I think it’s funny that I’ve picked up a bunch of Twitter followers this week, from gluten free purveyors of this and that. Advice, food, diets, you name it. Thanks for the follows, but I’m not sure I’m going to give you a lot after today. But keep following anyway, all right?
 
 
– Thanks to everyone who left comments this week. Lots of great feedback, for which I’m always grateful. By the way, I did bolus for half of the protein in my steak last night, and it worked great!
 
 
– Thanks again to Nikki for answering my questions and providing support in this endeavor. Seriously, if you want to know anything about Celiac Disease or eating gluten free, look her up. Or contact me, and I’ll put you in touch with her.
 
 
What did I eat on the last day of my quest?

Breakfast: One egg and a slice of the Udi’s whole grain bread from yesterday. Total Carb Count: 16g

Lunch: From The Flying Avocado, a California BLT, with bacon, lettuce, tomato, and avocado, plus a side salad. I shouldn’t have, but I ate it all. Total Carb Count: 51g

Dinner: We picked up some shrimp from the seafood counter at the store. A little salt and pepper, and we cooked it in some olive oil with chopped garlic in there too. Topped it with some fresh parsley. Put it on top of a salad with lettuce, shredded carrot, olive, green onion, and sunflower seeds, and grated some Iberico cheese on top (iberico is made from cow, sheep, and goat milk). Yummy. Some fresh strawberries for dessert. Total Carb Count: With the strawberries, I’m gonna guess it was about 40g

The last day of eating gluten free was a very good day. Which begs the question: will I ever do this again? Well, I don’t feel like I was starving myself. There were some fairly delicious options. It did take a lot more diligence in terms of reading nutrition labels and avoiding cross-contamination.

Really, it’s too early to tell. But I’m thinking yeah, I could do this again.

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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My week with Celiac… Day #6

January 25, 2013 – 10:36 pm

No, I have not been diagnosed with Celiac Disease.

Celiac is another autoimmune disease that occurs in about one half of one percent of the general population. However, according to JDRF, about 1 in 10 people with Type 1 Diabetes is eventually diagnosed with Celiac. According to ADA standards just released, as many as 16 percent of Type 1s could be living with Celiac. During this week, I’ll be living and writing about the gluten-fee life from the perspective of someone newly diagnosed with Celiac Disease.

Thanks to Nikki at Celiabetes for her very valuable information and feedback for this series.

It’s day 6 of eating gluten free, just like someone newly diagnosed with Celiac Disease. In yesterday’s post, I promised to write about gluten free bread.

When talking to people about this week, probably the most asked question was “Did you try any gluten free bread?” Scully asked about it too in one of the comments. And Nikki followed up that comment with one of her own. Here’s how it went:

From Scully: “have you tried any gluten free bread yet?
it’s a slippery slope between taste, texture,cost and BG damage. I’m curious what someone who doesn’t have celiac thinks of the (sometimes sad) GF bread options.”

From Nikki: “Right on, Scully. GF bread tastes somewhere between Ok and Ish. Some can be as much as 25g of carb per slice, too, which can turn into a BG landmine. And that’s besides the fact that most start at $5 a (small) loaf and up.”

These comments make me think about sugar free options for People With Diabetes. To us PWDs (actually, to all of us), a sugar free option of a normally sugar laden goodie is just not as tasty. So maybe it’s the same with Celiacs and gluten free bread. Or any other processed thing that is often made from a flour, barley, malt, rye, or oat base. Not as good. And too expensive. And too hard to find. And the thing is, as a PWD, I can eat the stuff with sugar in it… I just have to bolus for it. But if you’re dealing with Celiac Disease, you don’t have the option to do something like that and still eat a pastrami on Wonder Bread.

After all of that pontificating (don’t you love those big words?), I am happy to report that I found a delicious gluten free bread. Udi’s Soft and Hearty Whole Grain Bread is the real deal. To me, it tastes just like flour-based bread. It is expensive– $4.79 per loaf, which has about 16 slices in it. That’s pricey. The carb count isn’t bad compared to other breads. 22 grams of carbohydrates in 2 slices, compared with 28-30 grams per 2 slices of flour-based bread. All of us in the house tried it out, and we all liked it a lot. I toasted it in the oven with a some garlic, celery salt, and butter. Your basic garlic toast. And it was so yummy. So if you have deep enough pockets to afford it, I would definitely recommend the Udi’s.

What else did I eat today?

Breakfast: I tried another new product:

DSC00557

The brand name here makes me giggle a little. When I was younger, Kinnikinnick was another code word for… grass. Ganja. Weed. Marijuana. Unfortunately, while decent, these muffins didn’t leave me with the same kind of feeling. Not that I would know this. But you get my drift, I hope. Total Carb Count per muffin: 28g

Lunch: More gluten free lunch meat, and cheese on some GF crackers. I also had some fresh strawberries which, while they’re probably not from the northern hemisphere right now, were still very nice. Total Carb Count: 38g

Dinner: The Great Spousal Unit decided that I should somehow be rewarded for going gluten free this week, so she picked up some steaks and potatoes. I cooked up the steaks in my brand new cast iron skillet, which I’ve been wanting for some time. Total Carb Count: 49g

I was going to write about my new favorite cookies… but it’s already late on a very busy Friday during a very busy week. So I’ll save that for tomorrow. Until then, here’s hoping the rest of your week is fantastic.

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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