Monday, April 25, 2011

Such a tease . . . .

Get ready . . .

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. . . . 

It’s coming . . . .

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Are you in??  Check back here next week for full details and sign-up information!!

Thursday, April 21, 2011

Support: On-line and Off!!

I may sound like a broken record, but I love the D-OC.  After years of being the only person I knew with diabetes, it’s so incredible to have a whole support system just one mouse-click away.  (That’s a computer mouse, I’m not clicking any little furry creatures, thank you!!)

As wonderful as an on-line support system is, it’s also very important to have real-life, face-to-face, off-line support too.  I’m lucky that many of my on-line friends have become real-life friends - with phone calls and visits as often as possible.  I’m also blessed to gather with my Fairfield County Diabetes Dinner crew every few months or so.  But still, I wanted to branch out, find more people to connect with, do more to offer support.  So as I mentioned a while ago, I teamed up with my local JDRF and became part of a group working on launching a local Type 1 Adult Outreach Program.  There have been meetings, planning, and brainstorming.  It’s all been great fun, and I’m really really excited that next week we will be holding our first event!!

Click to enlarge!!
I really hope we get a good turnout for this event.  I hope I meet a ton of new people.  I hope, if you are in the area, you will join us!!  And I can’t wait to see how this new support group will evolve and where it will take us.

Do you have a local off-line support group?  Would you like to find one or help get one started?  Today at noon EST JDRF will be holding a live webcast to talk about their Outreach Programs and personalized support for those living with Type 1 Diabetes.  You can tune in live at noon at  If you miss the live airing, it will be recorded and made available on-line.

If you are reading this post, then I know you have an on-line support system.  But please tell me about your experience with off-line support groups - any tips and input can help others building support groups in their area!

Tuesday, April 19, 2011

Just. Keep. Going.

For a while now I’ve been trying to get into a regular exercise routine, eat a better diet, and lose these many many pounds that have crept on over the past few years.  Actually, the pounds have been creeping on over more than a few years, gradually enough that I didn’t even realize how big I had gotten.  It’s almost as if I have fallen asleep and I suddenly wake up trapped in a body I don’t recognize and stuffed into sizes of clothes that used to hang off me.

Last week I had enough.  I found a five-week exercise and eating plan designed to take off two pounds per week.  I threw myself into it and worked really really hard.  By Saturday I was down two whole pounds.  I just needed to maintain that until my Monday morning weigh in.

And then we went to a friend’s party Saturday night.  There were martinis . . . . more martinis than I should have allowed myself.  There was also Mexican food.  I chose a little more wisely than I usually do - but not wisely enough.


Yesterday when I got on the scale for my official weigh in, I found I had only lost 6/10th of a pound last week.  And I felt like a failure.  I was disgusted with myself for not having willpower on Saturday night.  I whined on Twitter . . . a lot.

And then Kelly reminded me of something important.
“Like diabetes, losing weight is about picking yourself up & starting all over again”
The more I thought about it, the more I realized this was true.  Diabetes knocks us down, beats us up and disappoints and disgusts us over and over again.  But we pick ourselves up and start again - because that is the only option we have.  Diabetes isn’t going anywhere, so we learn to deal with the hardships and just keep going.  Why not take that lesson into other tough aspects of our lives?

And that’s just what I did.  Okay, actually I cried a little.  I moped around a lot.  And, in the interest of full disclosure I must admit I ate some potato chips.  But then . . . .  I got back on that treadmill and walked for 45 minutes.  I am determined to just keep going.  This week I will lose 2 pounds.  I will remember that I am already down more than 5 1/2 pounds since the end of February.  And next time I go to a party, I will remember what didn’t work last Saturday and be better able to gauge just how much I can splurge without erasing all of my recent efforts.

Have you found yourself disappointed, disgusted or discouraged with something in your diabetes or non-diabetes life?  Have you fell a little short of your goals?  How did you pick yourself up and just keep going?

Monday, April 18, 2011

WEGO Webinar: Navigating Your Health Narrative

It’s no big secret that I’m a fan of Wego Health and all of the fabulous things they do to assist Health Activists.  So I wanted to help spread the word their upcoming webinar.  If you are a patient blogger, or are thinking about starting a patient blog, you won’t want to miss this.  Here are the details from Wego:

blog image small1

What: Navigating Your Health Narrative Webinar
Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D
When: Thursday April 21st 8pm EST (the webinar will last one hour)
Where: Sign up here and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

So, who will I “see” there on Thursday evening??

Friday, April 15, 2011

Coffee to . . . . bolus for??

Last night Pete and I went to an extra special event.  A very good friend of mine has started a coffee business and last night he held a small launch party.  I got to sample my first taste of Deadly Grounds - Coffee to Die For.  We sampled the Dark & Deadly Roast, and it was GOOOOD!!!  (Although at midnight, when I STILL couldn’t get to sleep?  Maybe not so good . . . . )

DG Coffee D&D Stiffy 12oz
 I don't know about you, but caffeine spikes my blood sugar.  In the morning, when I drink my daily vat of coffee, I bolus one full unit while the coffee is brewing to head off the coffee-spike.  If I have any more coffee during the day, I always choose decaf - partly because the caffeine will keep me up at night and partly because I usually choose to spend my carbs and insulin on actual food rather than beverages.  But I’ll make an exception for Deadly Grounds, because this coffee sure is bolus-worthy.  The problem is, I forgot to bolus for it last night because I’m only used to drinking caffeine in the morning.  Stupid caffeine spike!!

I’m really proud of my friend and his new coffee venture.  I love the way he ties in the whole “Deadly Grounds” theme through the products, packaging and advertising.

And yes, in case you are wondering, that is his hearse in the ad.  (Although that isn’t him behind the wheel.)  And yes, he has driven it to my house for a visit.  Nothing makes you the freak of the neighborhood like standing outside chatting next to the hearse on your curb!

Want to try Deadly Grounds for yourself?  Check out their Facebook page and click on the Shop Now button in the sidebar to place your order.  “Coffee to Die For”?  Well in my case, a better slogan might be "Coffee to Bolus For"!!

Monday, April 11, 2011

Diabetes is Easy.

People have told you this before, right?  Diabetes is easy.  All you have to do is make sure you don’t eat any desserts.  Have an insulin pump?  Well then, diabetes is even easier.  You don’t have to do anything - the pump does it all for you. 

I’ve denied it too long.  I’ve come to see the light.  Diabetes is easy.  Heck, it’s like a simple math equation.  In fact, let’s make what happened to me on Friday into a math equation to show just how easy diabetes really is:

Karen is hungry and would like to have a bowl of cereal for lunch.  (Karen is not going to have sugar-coated-sugar like Cookie Crisp or Cap'n Crunch.  Karen will have Kashi GoLean Crunch.)  Karen is starting with a blood sugar of 60.  Karen has also done 30 minutes on the treadmill and put in a brand new infusion site.  What will Karen’s blood sugar be 2 hours after consuming the cereal?  Please remember to show your work.

mathOkay, so:

Blood sugar 60 (low)
+ cereal (high)
- exercise (low)
- new site (low)
- a boatload of insulin (low)
- a 2 hour 130% basal (low)

=   a LOW post meal blood sugar.   Right?

WRONG!!  The correct answer is:
Blood sugar = 404 x y
where x = large ketones and y = huge amount of diabetes guilt over eating cereal.  (That’s right, GUILT over eating a bowl of cereal!!!)

Awww “for fuck sake” (hi Reyna!!), I calculated that one all wrong.  And I was a whiz at math in high school and college.  Maybe diabetes isn’t so easy after all.

Thursday, April 7, 2011

Just the beginning . . .

“This one day is a small step - just the beginning”  That is what Amanda Sheldon, Director of Public Relations, told us as we began our day Friday at the Medtronic Diabetes Advocate Forum.  In some ways, it was just a small step.  And in others, it was a big one.

Katie Szyman, President of the Diabetes Business Unit, told us that most of the Business Units (including their largest unit, Cardiac Rhythm Disease Management) connect mainly with physicians.  The Diabetes Unit is different - it is more about connecting with patients, supporting us and listening to us.  Learning more about our needs can help them decide what to focus product development on - which makes sense to me since I'm the one managing my disease 24/7 and using my pump throughout the day and night.  Not only did the Medtronic Executives listen to what we had to say that day (and we had a lot to say), but Karrie Hawbaker, Public Relations Manager, was also reporting questions from Twitter via the #MedtronicDAF hashtag.

Although they were not able to speak about any new product development that has not yet gotten FDA approval, we did get a sneak peak at some things that have gotten the green light.  You probably already have heard that CareLink is now Mac compatible.  We also previewed MyMedtronic Connect, a new mobile phone app and we exchanged feedback on that.  While some said it wouldn’t be useful to them, I think I would use it to check the on-line store and my order status, and to set reminders for myself to order supplies.  I’d probably go to the app first when looking for Airport Security tips and to review the Travel Checklist.  I also had no idea about the Travel Loner Program until I saw it in the app.  I believe the point was brought up both in the room and via Twitter that it would be nice to have our CareLink info - especially the reports and charts - on the app.  Unfortunately, FDA approval is needed before that can happen.

I hate to play favorites, but I think my favorite speaker was Lane Desborough, Product Strategist.  He is a Mechanical Engineer who joined the Medtronic team after his son was diagnosed with Type 1 diabetes.  My husband is also a Mechanical Engineer, and I can attest that engineers seem to have brains that never quit.  Pete is always looking at things and trying to figure out how they work and how they can be made better.  I got the impression that Lane thinks like that too, and I'm thrilled to know the Product Strategist is a Mechanical Engineer.  Lane showed us his representation of a Person With Diabetes and their “Batman Belt”, or all of the supplies we need to carry around.

Lane spoke about working to cut down the bulk.  He spoke about working to relieve some of the burden of diabetes management through better equipment.  Todd Rubin, Director of CGM joined the conversation and they spoke about SAFETY being most important and designing for the “abnormal” circumstances rather than normal ones.  They spoke about the balance of wanting a product to have EVERY new feature patients wish for and not taking FOREVER to get a new product out.  If there are eight great new improvements ready, but the ninth improvement on the wish list is significantly holding things up, the tough choice is sometimes made to drop that ninth improvement and move it to the next generation.  Safety and timeliness are factors I had never considered when I whine about why my pump can't do this or that or be thin and small like an iPod.

Overall I think the day was a big success.  I know I learned a lot and I could tell the Medtronic staff did too.  Sure, a few things were discussed that I didn’t, and probably won’t ever, agree with - like the discussion of why someone might not want a pump and how to educate them.  I’m always the first to speak up about how I feared going on a pump, how listening to others in the D-OC who had those fears too but tried the pump anyway gave me the courage to do it, and how it has been the best management decision for me.  But the most important words are FOR ME.  We are all different, and pumping is a very personal decision.  Others may do much better on MDIs than they could on a pump, and I respect that.  Also, Scott pointed out the at times finances can prohibit a pump more than personal choice.

I do hope this was truly “just the beginning” of communication between Medtronic and the on-line patient community.  I do hope other companies make strides to increase communication as well.  It may seem like one small step, but it goes miles towards bringing us all together for the good of the patient as well as the company.

If you’d like to see more pictures from the Forum you can view the Medtronic  Flickr Set.  The set also include pictures taken before the Sensor Manufacturing Tour, which I’ll write about in another post.

Wednesday, April 6, 2011

(Kind of) Wordless Wednesday - Notes


Nope, I wasn’t kidding when I said I took a lot of notes at the forum on Friday.  I hope to have them assembled into some kind of a blog post tomorrow!!

Monday, April 4, 2011

Unpacking . . .

Thursday I boarded the plane I was so nervous to board and flew out to Los Angeles for the Medtronic Diabetes Advocate Forum - in which Medtronic invited a group of people from the Diabetes On-Line Community to their headquarters for a conference.  Yesterday I did it all in reverse to come back home.  I stared out the window or read my book and tried to think of wide open spaces whenever I started feeling cramped.  It wasn’t that bad.  And even if the flight had measured up to my worst fear, it still would have been worth it when I factored in the experiences that awaited me in California.

I’m spending today unpacking and organizing my luggage.  And I’m also unpacking and organizing my thoughts.  It is unbelievable how much I had the good fortune to experience in such a short time.  I won’t lie, I was nervous when I left - and not just about the flight.  I was nervous about the people I’d be meeting and the sessions I’d be attending.  What if I sounded like an idiot or totally embarrassed myself?  Well, okay, I guess I did  just that when the topic came up about how floppy the Minimed CGM is - before rational thought kicked in I found myself hopping up in front of a room full of Medtronic employees and my peers and flashing my upper butt cheek to show how the sensor and transmitter need to be completely taped down.  (Note to self: it’s best to keep your butt cheeks covered in public!!)  Hopefully I also contributed some useful insights along with my public nudity.

So yes, I was nervous.  But here’s the thing . . . the Medtronic employees seemed nervous too.  They genuinely wanted to make sure the forum was beneficial to us and that we weren’t bored and yawning half way through our day.  (We weren’t - each and every speaker was fabulous, every employee I met rocked and the tour of the sensor factory was fascinating).  They made snacks and beverages available to us all day.  We were encouraged to get up and take a break any time we needed to - they even had some rooms set aside with computers and phones if we needed to check in on our lives back home.  They admitted they worried about trying to pack too much into our day - and we admitted the day seemed to fly by and we would’ve loved to have had more time!  As I mentioned when I spoke on the WEGO Socialpalooza panel, I believe both patients and pharma / medical tech companies will benefit from two-way interaction.  The Diabetes Advocate Forum made that belief even stronger.

My two days in L.A. also strengthened my belief that the D-OC is amazing!  I was lucky to connect with some old friends, meet some on-line friends in person for the first time, and get to know some great people I hadn’t had much contact with before.  My two days in L.A. were also pretty exhausting, so I was glad to spend some down time on Saturday seeing a few sights.  I also want to mention that the Hotel Palomar and their staff were fabulous and really go out of their way to make sure their guests are comfortable.  I was even encouraged to go behind the front desk at 4:45 am and help myself to coffee while I waited for my ride to the airport.

WheresTheSun Enjoying coffee and scenery (but hey, no sunshine??) on the Santa Monica Pier.

So now I’m back home, trying to sort out my suitcase and my experiences.  K.C. is showing how much she missed me be sticking to me like glue, gazing at me as if to make sure I’ve really come back to her, and taking every opportunity she can to give me kitty kisses and nuzzles.  Pete seems just as happy to have me back - although he has kindly refrained from following me around the house and staring at me when I’m not looking.  Once I catch up with them and pour over the notes I took during the Forum I’ll have a lot more to share with you.  And yes, I did take notes, pages and pages of notes . . .  it was almost like I was back in college!!

Disclosure: Medtronic paid for my flight to and from L.A., for two nights in the hotel, and for my meals on Thursday and Friday.  I was not asked to blog or tweet, and my opinions are my own.  My decision to stay an extra day for sight-seeing was also my own and paid for by me . . .. or more accurately, paid for by my wonderful husband since I’m still unemployed at the moment.

Tongue-in-cheek disclosure: As I finish this post, I find my blood sugar is “scary low” (a.k.a. “low low”, a.k.a. “holy crap, meter, are you really telling my my blood sugar is 35?”).  So  perhaps this is all just a foggy low-blood sugar hallucination.