Tag Archives: diabetes

My week with Celiac… Day #1

January 20, 2013 – 10:27 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.

Toward the end of a Wednesday DSMA Twitter chat a few weeks ago, I had a short conversation with Nikki from Celiabetes. Nikki has been living with the triple threat of Type 1 Diabetes, Grave’s Disease, and Celiac Disease since 2010. During our conversation, Nikki made a very good case for how living with Celiac is difficult… from diet to shopping to eating out to going to work every day. And that gave me an idea: Borrowing on the Be T1D for a Day initiative from JDRF back in November, I thought… what if I spent a week living like someone newly diagnosed with Celiac? And then wrote about it?

First a description of Celiac Disease: According to the Mayo Clinic website, “Celiac (SEE-lee-ak) disease is a digestive condition triggered by consumption of the protein gluten, which is primarily found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. (Editor’s Note: Add in oat and malt.) People with celiac disease who eat foods containing gluten experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients.”

So that means no wheat, barley, rye, oat, or malt.

Nikki was gracious enough to answer a bunch of questions I sent her, and I’ll probably share some of her insights this week. She is an absolute encyclopedia of knowledge on this subject. I read through all of the information she gave me, I ordered Gluten Free for Dummies from Amazon, and then I set everything aside. I ignored it for about two weeks. Why? Because, while it would have been easy to do weeks of research, prepare, and then do this week’s worth of diets, it wouldn’t be authentic. Instead, I gave everything the once-over, then put it away until today. Because if you’re newly diagnosed, you don’t get weeks worth of research first. Today I got everything out again and started the same process that probably everyone newly diagnosed with Celiac experiences… what do I eat next?

One of the things Nikki impressed upon me is that not only do I have to avoid any gluten in my diet, I have to avoid any cross-contamination that might occur by cooking in a pan that’s previously been used for something with gluten in it. And when buying pre-packaged products or eating out… wow. In Nikki’s words:

“When it comes to food prep, or eating at someone else’s house, or even going out to eat, the main concern for a person with Celiac Disease is cross-contamination. Gluten is a very sticky binder, and it cannot be removed from certain porous surfaces, like cutting boards, plastic containers, wooden spoons, spatulas, food flippers, pizza stones, and non-stick pans that have scratches. Silverware should be fine as long as it’s been thoroughly washed, same with plates/bowls (as long as they are not plastic). Glassware is fine to wash and use.”

So instead of figuring out what to eat, I first had to make sure I had a skillet, saucepan, and utensils that I could cook with.

DSC00529

Aaaaand… what did I eat today?

Breakfast: Since I couldn’t do much without something to cook in, I just got a glass bowl out and chopped up some green onions (known by many as scallions), some frozen peppers from our garden this summer, and a kumato tomato. I put all of that in my bowl with a couple of eggs and that was my breakfast. Total carb count: 0g

Lunch: I haven’t had the chance to get to the grocery store yet, so I just winged it. I made some rice, added some smoked ham (I lucked out and it was gluten free) and another small tomato, and that was it. Total carb count: 36g

Dinner: That was the best of all today. The Great Spousal Unit wanted to make some Turkey Soup anyway, so she got out the leftovers from the holidays that she was saving. She added a little fresh zucchini, yellow squash, potatoes (potatoes are gluten free), green beans, and a little rice left over from lunch. She let it sit in the crock pot for about six hours, and here’s what the finished product looked like:

DSC00540

Total carb count: 30g (mostly from potatoes)

I guess it was a good start to the week. But there were some real deja vu moments for me today. For the first time since my Diabetes diagnosis, I was confronted with “What do I do next?” and “Is the next thing I eat going to kill me?”. And I have six more days of this left. Imagine if it was you, for real, and you had the rest of your life to live with Celiac. And Type 1 Diabetes. More to come.

Carb counts are estimates only. Check with a registered dietician to find out what a healthy carb count is for you.
 
 
 

By StephenS | Posted in My week with Celiac | Also tagged , | Comments (6)

The Friday Buzz.

January 18, 2013 – 9:23 am

Three quick things for you on this Friday:

1. JDRFSummit

Registration for the 2013 JDRF Type 1 Diabetes Research Summit is underway. No less than five of the people working on the Artificial Pancreas at the University of Virginia’s Center for Diabetes Technology will be there. Tired of hearing me talk about it (I think I’ve done something like five posts on the subject)? Here’s your chance to get the details straight from the source. I’ve heard all five of them speak, and let me tell you, it’s worth the trip. There will also be a couple of sessions related to islet cell research by representatives from Duke University and MIT.

It promises to be a very informative and inspirational day in Bethesda, Maryland (just outside of Washington, DC). For more information and to register, go to http://www.jdrfsummit.org

2. I’m starting a special series right here beginning this Sunday. I haven’t really done any preparation for it… but that’s part of the plan. I hope you’ll check in next week to find out more.

3. Finally… listen, Boston teams have won enough over the last 15 years or so. So move over New England… Here comes Baltimore. Go Ravens!
 
 
My apologies to those of you who don’t follow American football. Enjoy the weekend…
 
 
 

By StephenS | Posted in Fridays | Also tagged , , | Comments (0)

48 Things that make me… Me.

January 17, 2013 – 9:43 am

Okay, so Cherise at Diabetes Social Media Advocacy started this thing yesterday, and I was too busy to steal it for a post of my own. Others have done this, and I encourage you to read them and possibly post your own answers somewhere too, including here if you like. So better late than never… here are 48 things you may not know about me:

1. WERE YOU NAMED AFTER ANYONE?
I was not.

2. WHEN WAS THE LAST TIME YOU CRIED?
When was the last time I watched “It’s a Wonderful Life”?

3. DO YOU LIKE YOUR HANDWRITING?
I have great penmanship… don’t try to decipher my note-taking, however.

4. WHAT IS YOUR FAVORITE LUNCH MEAT?
Is pit beef a lunch meat? Then YES. That’s my favorite.

5. DO YOU HAVE KIDS?
No kids. Always wanted kids.

6. IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU?
Yes, of course! ‘Cause I need all the friends I can get.

7. DO YOU USE SARCASM A LOT?
Oh, you want to talk politics now?

8. DO YOU STILL HAVE YOUR TONSILS?
No! Tonsils removed when I was four years old… in 1966. In those days, they had you stay in the hospital for like five days after the operation. I still remember it. Creepy.

9. WOULD YOU BUNGEE JUMP?
I am sooo afraid of heights. But I would bungee jump. I like to confront my fears. And scream my head off through the whole process. The screaming releases the fear.

10. WHAT IS YOUR FAVORITE CEREAL?
Raisin bran. Plain enough for you?

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?
Almost always.

12. DO YOU THINK YOU ARE STRONG?
This requires a “body of evidence” answer. If you asked me if I feel strong right now, I would say no. If you asked me if I’ve been strong over the last 22 years with diabetes, the answer is definitely YES.

13. WHAT IS YOUR FAVORITE ICE CREAM?
From the store: Edy’s rainbow sherbet (monster high carb effect, by the way). And Trader Joe’s pumpkin. So pumpkin-ey.
Specialty brand: Black Cherry from Graeter’s in Cincinnati.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?
Whether they’re open or closed. Will you talk and be nice even if we seem to be different on the surface? I can usually tell within ten seconds.

15. RED OR PINK?
Red, Red, Red.

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF?
That I’m getting older. Can’t do anything about it, so I don’t think about it much.

17. WHO DO YOU MISS THE MOST?
All of my nieces, nephews, great nieces, and great nephews. Kids are still our future and worth every effort we can make for them. Even if some of them aren’t kids anymore.

18. WHAT IS THE TECHNIQUE THAT YOU NEED TO WORK ON THE MOST?
Remembering. Everything. Everything.

19. WHAT COLOR SHOES ARE YOU WEARING?
Simple black dress shoes. Honed to a bright sheen.

20. WHAT WAS THE LAST THING YOU ATE?
Grits and turkey sausage for breakfast this morning.

21. WHAT ARE YOU LISTENING TO RIGHT NOW?
Buckwheat Zydeco Radio on Pandora. Didn’t see that one coming, did you?

22. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE?
Burnt Orange. Or Indigo.

23. FAVORITE SMELLS?
Bacon, bacon, bacon!

24. HOW IMPORTANT ARE YOUR POLITICAL VIEWS TO YOU?
Important enough that I care deeply, not important enough to hurt someone over… figuratively or literally.

25. MOUNTAIN HIDEAWAY OR BEACH HOUSE?
Both please.

26. FAVORITE SPORTS TO WATCH?
Baseball on a summer day or night. Horse racing on a spring day or night. Both offer long periods of inaction punctuated by amazing moments of thrillage. I read something like that somewhere.

27. HAIR COLOR?
Brown.

28. EYE COLOR?
Blue.

29. DO YOU WEAR CONTACTS?
Nope. Glasses. When I can find them.

30. FAVORITE FOOD?
Steak please.

31. SCARY MOVIES OR HAPPY ENDINGS?
Happy endings.

32. LAST MOVIE YOU WATCHED?
Men in Black 3. First straight-to-video movie I’ve ever watched. Same story… different characters.

33. WHAT COLOR SHIRT ARE YOU WEARING?
Your average plain white dress shirt. With a sensible green tie. Sounds worse than it is.

34. SUMMER OR WINTER?
Unquestionably summer.

35. FAVORITE DESSERT?
Key Lime Pie. Or Cherry Pie. Or just Pie. Or Baklava.

36. STRENGTH TRAINING OR CARDIO?
Cardio, with just enough strength training now and then to keep me honest.

37. COMPUTER OR TELEVISION?
Slowly but surely moving from the television side over to computer.

38. WHAT BOOK ARE YOU READING NOW?
One Shot at Forever: A Small Town, an Unlikely Coach, and a Magical Baseball Season by Chris Ballard. I need a “no-thinking” book now and then.

39. WHAT IS ON YOUR MOUSE PAD?
That question is so 90’s. I don’t need no stinkin’ mouse pad.

40. FAVORITE SOUND?
Anything involving a baseball.

41. FAVORITE GENRE OF MUSIC?
I love all music. When it’s played by actual instruments. And not lip-synched.

42. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME?
Kilkenny, Ireland, 2004. Such wonderful, friendly people.

43. DO YOU HAVE A SPECIAL TALENT?
Ahem… Yes. Yes I do.

44. WHERE WERE YOU BORN?
Cincinnati, Ohio USA on April 9, 1962. Reds Opening Day, and my father had to give up his ticket. They lost anyway, Dad.

45. WHERE ARE YOU LIVING NOW?
Baltimore, Maryland USA since September, 1994.

46. WHAT COLOR IS YOUR HOUSE?
Just your average brick Cape Cod.

47. WHAT COLOR IS YOUR CAR?
I have a bright red truck.

48. DO YOU LIKE ANSWERING 48 QUESTIONS?
These 48 questions are fun. I’m not sure I’d like 48 questions about my job.

Thanks Cherise. And Happy Belated Birthday! It’s been a good exercise to help clear my mind. Now I can start working on where I left that #@**%!! meter this time.
 
 
 

By StephenS | Posted in Additional Inspiration | Also tagged , | Comments (3)

Site Change Musings, Part 2.

January 15, 2013 – 11:21 am

Time for part 2 of our discussion about infusion sites. Lots of super comments after yesterday’s post. Let’s see if we can answer a few more questions today.

If I have trouble with a site, how long do I wait to change it? That depends. Didn’t expect this to be a simple answer, did you? Mostly, how long I wait is in inverse proportion to where my blood glucose readings are. If my BG is hovering in the 200-250 mg/dL range for a while, I’ll try to do my best to get that number down. Drinking lots of water, avoiding almost all carbs, exercising, etc. If I’m still not coming down roughly 18-24 hours later, I’m moving on to a new site. But if I’m stuck in the 300+ range, I’m waiting only about 8 hours tops. I should also mention here that this kind of thing doesn’t happen very often to me, so I don’t have a lot of experience. And I hope I don’t get a lot of experience with this, if you know what I mean.

Do I have a favorite site? Yes… that’s definitely my leg. Never hurts going in. It always feels like it’s out of the way (except I sometimes forget it’s there when I take my pants off… #TMI). In fact, I’ve been known to time my site changes or switch around the order temporarily just so I can have it in my leg for long bike rides. Always seem to get a smooth delivery of insulin, maybe because there’s less fat there. If I had enough space, I think I would have it in my leg all the time. By the way, before finding the Diabetes Online Community, I had never even heard of using any space other than my midsection or my butt. Thanks DOC. My second-favorite site? On either side. It just feels comfy, though it’s much more likely that I’ll rip the thing out from there than from anywhere else.

And a final bonus question… thanks Jen for making me think of it: Will I do a site change anywhere? Only at home? Okay, two questions. I’ve only done site changes at home or in a hotel room (once without an inserter). Never at work. Never on a day trip somewhere. At work I’m just worried about getting a gusher when pulling out the old cannula. Which I suppose I could handle by waiting to pull the cannula until I get home. So maybe I’ll try that in the future. Otherwise, I don’t know. Can’t think of a reason not to do a change somewhere, other than for sanitary reasons. I think my hang-up (and it’s really my hang-up) is the whole my comfort with doing the change versus someone’s discomfort watching me do the change thing. I don’t really have a problem, but I don’t want someone else to feel weird about it. In the greater sense though, I think it would be helpful for people to see things like this that we have to do all the time, so they can be reminded that diabetes is real and it’s not a simple thing to live with.

Once again, feel free to post your answers, or any additional questions, by leaving a comment below. It’s been a great discussion so far.
 
 
 

By StephenS | Posted in Pumps | Also tagged , , , | Comments (3)

Site Change Musings.

January 14, 2013 – 9:47 am

Okay, that title is a little whimsical for such a mundane subject. But I did an infusion set change last night, and it brought up a lot of questions for me:

How often do you change your sites? Where do you place your sites? Do you have a specific trouble spot? If you have trouble with a site, how long do you wait to change it? Do you have a favorite site?

Let me take those one at a time. First, How often do I change my sites? The answer is that I (usually) change them when my reservoir goes dry. How long it is between site changes is then determined by a number of factors: how much insulin was in my reservoir to begin with; how my diet has been since the change, and how that affects my glucose; and how much I exercise between changes. Sometimes that means a site will last four days. Sometimes it will last six. My all-time record is seven days. But let me tell you, a site gets mighty sore after seven days. I try to keep it at four to five days.

An additional question: Why four or five days instead of the suggested three from manufacturers and the FDA? The answer is simple: As I’ve said before, I’m consciously concerned about real estate. How much usable real estate my body has, and how long I’ll be doing this pump thing, and whether I might run out of good infusion sites are all things I think about every time a new site goes in, and I take a look at the previous site. I don’t know if going an extra day or two is really helping to preserve future infusion sites, or if it isn’t. But my gut feeling is that it’s helping. I plan on being around for a lot more years, and I don’t want to have problems when I’m 80 because I ran out of decent places to insert a cannula.

Where do I place my sites? I generally rotate them between six places: My right side, my right leg, my stomach to the right of my navel somewhere, my stomach to the left of my navel, my left leg, and my left side. In that order. That means at four days per site I’m using a given area every 24 days. At five days per site I’m using an area every 30 days. I haven’t tried using my arm yet… I don’t know what I’d do with the tubing, or if I’d have enough. And I haven’t tried the back of my midsection or my bum. Mostly because I can’t see around there, which I realize is a completely ludicrous argument. But there you have it.

Do I have a specific trouble spot? That seems to be my belly. Especially lately. I don’t know why. But I’ve had some stubborn highs the last few times when it’s been in there. Even though I move it around a lot between high, low, a little to the left, a little to the right, etc. It just doesn’t seem to be working great there right now. Maybe it’s the extra baggage I’m carrying around right now.

Since this is getting a little long, let’s stop right here for now. I’ll pick up answering questions about infusion sites later in the week. Until then, feel free to post your answers, or any additional questions, by leaving a comment below.
 
 
 

By StephenS | Posted in Pumps | Also tagged , , , | Comments (9)