On an overnight trip to Dallas two weeks ago, I broke out in some rather ugly hives — again! My lips poofed up like I’d been slammed with a hockey puck, and my right eye went all ape-like. This lasted for several days.  It was that damn gluten allergy again, I must assume, although for the life of me I can’t figure out what I “ate wrong.”

This experience reminded me about a post from just about exactly three years ago, which kind of sums it up. I’m thinking No. 4 needs to be moved up (!) :

Seven Things Worse Than the Diabetes

Diabetes. That all-consuming pain in the @$$… But I like to remind myself that there are worse things.  No, really, there are.  Make a list.  Here’s mine:

1. Aging.  The front of my hair is getting thin.  And my face looks so drawn in photos these days. I miss that fresh-faced girl.

2. The Carpal Tunnel Syndrome — crippling for anyone who sits at a keyboard as much as I do.

3. Gluten-intolerance.  No wheat = high-maintenance lifestyle. Ugh.

4. Yeast where it doesn’t belong. Enough said.

5. Future Anxiety — which I try to keep in check — but what will become of us someday? Will we have kidney failure and become incontinent?  (Sorry, but the mind is unruly at times)

6. Parenting Anxiety — what will become of our little ones?  Will they contract some (possibly worse) chronic disorder?  Or worse yet, run into some loon who turns out to be a predator?

7.  “Too Profitable to Cure.”  If this is The Anadulterated Truth, may all the responsible parties be struck by lightening.

There now.  Feel better?  Me neither.  But it helps to share.

Editor’s note: I was tempted to add “housework” to this list, but decided that might be just a little too whiney.

There are so many great events around empowered patients and consumer-driven healthcare in the Fall. It also being soccer season, the kickoff of the school year, and time for nearly every existing Jewish holiday, I can’t possibly attend as many as I’d like to.  This makes me especially thankful to have some good D-blogger friends, such as Allison Blass, who recently attended one of these key conferences, and reports back to DiabetesMine today:

A Guest Post by Allison Blass, LemonadeLife blogger and intermittent correspondent

Last Tuesday, I attended Digital Pharma 2009, a three-day conference-meets-unconference event that focused on pharmaceutical social media marketing. The first and third day involved a more unconference structure, but I was there on the second day which was structured with regular, invited speakers. Including me! I was there to speak about patient blogging, but I was also there to learn about how pharmaceutical marketers are dealing with the surge of social media marketing and how they can communicate with their customers (us) online. Roche Diabetes Social Media Summit, anyone?

I was honored to be invited to speak to this group of marketers who clearly are very curious about how to do the best job they can, which is very much appreciated, but are still stumped by how to interact with patients on the Internet (you can thank the FDA for that) but also, I think, with patients in the real world. I was one of the last speakers, so I had the opportunity to listen to the struggles and challenges to make social media successful within the pharmaceutical company, because of the FDA regulations required on pharmaceutical companies to report EVERY adverse reaction and off-label usage of their drug. This gets time consuming, so most pharmaceutical companies would like to avoid the Internet. The problem? This is where the people are, and the people are moving on without Big Pharma (and many other consumer companies who are late to the game).

Craig DeLarge, Associate Director of eMarketing for Novo Nordisk, was one of the first speakers of the day and he was one of my favorites (not just because he was from a diabetes pharma – though that didn’t hurt). Craig focused on “relationship marketing,” or how pharmaceutical marketers could build relationships with their customers (US!).

He posited this question: “What brands love you?” Most of the audience mentioned consumer lifestyle companies, like Apple or Starbucks, or companies that had excellent customer service. And that was Craig’s whole point: that companies with the best and innovative customer service are the ones that we in turn love, or at least have great favor towards. I thought about what diabetes brands loved me. Novo Nordisk, actually, was one that occurred to me and I mentioned this to Craig later. They’ve done a tremendous job of sponsoring diabetes education programs throughout the world.

Listening to this conversation between pharmaceutical marketers made me think about what we, as patients, would say are the Big Pharma brands who “love” us. And why? Novo Nordisk makes a product that I don’t actually use (I’ve been on Humalog since Day 1, for no other reason that I’ve just never asked for a different prescription), but I still find the company to be very respectable because of all the community outreach they’ve done and support they’ve done in the diabetes community not just here in the United States, but also throughout the world. But what other companies have shown much concern or love towards us? Craig urges the marketers to show more concern towards customer service, rather than simply “selling” a product. This I agreed with completely, considering one of the most common pros in product recommendations is the customer service.

Craig stated a motto that he encouraged the marketers to reflect on: “I am in it for us, and mostly for you.” As patients, as lifelong customers of these companies, I am pleased that this concept of caring about the customer — not just the bottom line — is starting to be spread throughout the pharmaceutical company and hopefully this will not be lost after this one conference.

Many of us don’t trust pharmaceutical companies. That was especially evident after the Roche Diabetes Social Media Summit in July, when those in attendance had trouble getting passed the question, “What exactly do they want from us?” Pharmaceutical marketers are trying to figure out the exact same thing. How to talk to us, how to interact in a way that will be valuable and not spammy, and how to educate and sell without losing our attention. Since social media interaction is so limited right now because of FDA regulations, it will be interesting to see how these things progress. One thing is for sure, we will continue to need pharmaceutical companies.

And we will continue to talk about them on blogs, Twitter, and social networks — whether they’ll respond or not.

****

Too right, Allison!

Also, Editor’s Note: The FDA is set to hold a public hearing on “issues related to the promotion of FDA-regulated medical products … using the Internet and social media tools” on Nov. 12 and 13, 2009. Cross your fingers that they create some clear and reasonable guidelines — at long last.

We tend to assume that the big companies making glucose monitoring products do nothing but sit around thinking about how they can sell more product. You can’t blame us; it sure looks that way from the outside.  But late last week I was privileged to get an inside view of some of the real innovation going on behind closed doors.

I was invited to visit Roche’s New Concept Incubator, a small “think tank” of about 20 people including designers, sociologists and behavioral experts located just down the road from me in Palo Alto, CA.  My role was to spend the morning sharing my knowledge about Online Social Support Environments for PWDs.

Before I go on, the requisite disclosure:

[Disclosure: In return for my participation with Roche, I was paid a modest honorarium, and reimbursed for travel expenses and lunch. All content here is that of the author and neither reviewed or approved by Roche. In fact, I was NOT encouraged to post about this visit or to publicize Roche in any way.  The speaker's agreement I signed included the statement: "neither your participation... nor any payments or reimbursement received by you... are or will be intended to induce, or in any way influence you to prescribe, promote, recommend, or require the use of any Roche product."]


The reason I’m posting about this is because I found it fascinating — and I think many PWDs out there would like to know about the high-powered creativity that companies like Roche are investing in finding The Next Big Thing in Diabetes Care.

And this Next Big Thing has nothing directly to do with glucose monitoring products. Rather, this group has conducted extensive qualitative research primarily with Type 2 diabetics and discovered that which is so obvious to those of us living with diabetes (as described to me by a lead engineer): “People’s needs are scattered; they’re struggling to deal with diet, activity, stress and depression, social support, busy lives like the rest of us and more. There’s not one big problem, so there’s not one single solution that can help people manage their diabetes better. Rather, a holistic solution is required.”

A brainstorming environment

Tools of the creativity trade (in every cubicle)

I’m not at liberty to say exactly what this group is developing (which is business-confidential for obvious reasons), but I can tell you that it’s quite a departure from what you would expect a “stodgy” company like Roche to be working on.  It’s all about educating people about their illness and helping them live better with it.

Mapping the life of a PWD

What I tried to share with their team was more detail on the everyday frustrations of us PWDs, and what we get out of connecting online. Lots of healthcare professionals out there are still stuck on the idea that patients exchanging info online can be dangerous, because the content may not always be medically accurate. The Roche innovation team seems to well understand that this is so not the point.  They’ve looked around enough to see that social networks are making a big impact on people’s mental state and motivation.  So what else can be done to actually get people to start eating better and be more physically active, for example?

Roche is certainly not alone in trying to figure out how to motivate behavior change. But I was duly impressed by their approach to “enable emotional intelligence and empathy-driven strategies within companies.” Can’t argue with that.

btw, my host was Ryan Rodriguez, an Innovation Strategist and very sweet guy, who tells me the Incubator hopes to have an early prototype of its first concept by late next year.

Thank you, Ryan!

Viva la Innovation.

Maybe that isn’t the most politically correct title for this post; I should grow up and say “women’s issues,” right? Naw. Just like any formerly repressed group, we get to refer to ourselves any way we want. And a girl might just change her mind, you know

I’ve been feeling especially frustrated with all the “complications” of being a woman lately (and not just at that time of the month!*) Did you know, for starters, that women are three times more likely to contract an autoimmune disease than men? They’re at higher risk for heart disease, osteopetrosis, arthritis, and asthma, according to this new study on diseases of major concern to women. I’m SO TIRED of hearing about all the bad stuff woman are more prone to than men.

As if that weren’t enough, our lives are just a helluva lot less convenient than theirs (see above*).  And after a certain age, “it’s all patch-patch,” as my best friend’s mother used to say.

My husband made the mistake of grumbling about how much time I take in the bathroom recently. Hell, Buddy, do YOU have to spend precious time on the following:

- exfoliating and moisturizing (repeat, repeat, repeat)

- strategically applying makeup, and then painstakingly removing it

- hair conditioning, blow-drying and/or otherwise styling, fixing, fussing and spraying until it looks decent (including locating and agonizing over new gray hairs)

- selecting pretty earrings, finding the match, and then getting them in/out of your ears

- cleaning and applying / removing contact lenses, which, if dropped, are equivalent to seeking the proverbial needle in a haystack — without the help of your corrective lenses!

+ diabetes crap: testing blood sugar, changing lancets, cursing at uncooperative test strips, preparing infusion sites and drawing up insulin, taking inventory of D-supplies, and occasionally groping for glucose tablets — without the help of your fully functioning brain!

Did I mention that fluctuating blood sugar messes with the bacterial balance of your female privates? Yes, I believe I did. Which can make sex quite uncomfortable at times. Listening, Guys?

The old saying goes that as woman, you have to suffer to be beautiful. What if you’re just shooting for “somewhat put together?” Even that takes far too long, especially with this stupid time- and energy-sucking disease — which btw plagues more than 11 million American women over the age of 20, “including one-fourth who do not know it,” according to that new PhRMA Women report.

So sorry, Sisters! Go directly here.

I laughed so hard when I saw this tweet from a fellow D-girl blogger the other day:  “Is it a bad thing that I’m addicted to eyeshadow? Seeing as how I don’t wear it every day anyway?“

And why is that funny?  (As it happened, my husband was looking over my shoulder at that tweet and gave me a weird look. Of course he didn’t get it!) Girls, help me out here: why are we addicted to all that shines and sparkles?

So anyway, I’m totally off topic now and it doesn’t matter. Because I need to go eat some yogurt. And do my nails. And take my iron supplements. And spend some “working mom’s quality time” with my kids. Oh, and log all those BG numbers. Right after I pick out my outfit for tomorrow — perfect shoes and all — and figure out what’s for dinner.

Halloween is on its way, and of course, we PWDs are bracing ourselves for all that candy — in your face. It ain’t easy to resist, even if you’re not normally tempted, because suddenly there are the bowls-full of the stuff at home and work, at the mall and at the dentist’s office. Yipes!

I noticed some chatter about how it might be good to swear off candy altogether, or to stick to the sugar free stuff.  Somehow I felt an obligation to re-broadcast the warning that many “sugar free” candies have two problems:

1) they are engineered to be malabsorbed by your body. So your stomach gets upset by all those chemicals it can’t break down

2) they often contain as many, or nearly as many, grams of carbohydrate as other sweets. This means they still make your blood sugar spike.

Actually, my doctor says it’s better to eat a small amount of real chocolate than to indulge in the stuff with the big “sugar-free, diabetic-friendly” marketing labels.  Because in the latter case, you really don’t know what you’re eating.

Out of this discussion and my ensuing research came some interesting tidbits from around the web:

* “Just in case you were not aware: Do you know how Splenda/Sucralose was discovered. Its scary, but it was discovered by accident when they were developing an insecticide.” Yech!

* Indeed, according to this exposé:
“Almost every artificial sweetener has been a by-product of chemical experiments where the person doing the experiments accidentally tasted the chemical they were working with and noticed it was sweet. These sweeteners are the byproduct of chemical experiments and are not a food. These sweeteners are new chemicals and our bodies are confused about what to do with them.”

* “I don’t eat any artificial sweeteners and check everything for them. They are even in toothpaste. If you are curious about them this article provides some good info: ‘Artificial Sweeteners Could Be Hidden in Your Foods and Medications.’”

In studies, artificial sweeteners have been linked to obesity, headaches, and other ailments.  But we all know that plain ole sugar is bad for you too, and not just because it spikes your BG. Needless to say, we can’t win.

A certain Dr. Scott Olson insists that our best choices for sugar substitutes are Stevia and Xylitol:

~ Xylitol is a natural sugar that doesn’t raise blood sugar as high as many sugars, and actually appears to help reduce cavities.

~ Stevia is an herb that tastes sweet, but has no calories. There are research studies that show that Stevia can actually help with blood sugar control.

All good; I’m a Stevia user myself. But I’m also addicted to diet soda. With diabetes, you have to pick your battles! (It’s impossible to not eat everything that could cause something you want to avoid.)

On that note, and to perfectly contradict myself on the “real chocolate” argument, I have recently discovered — and couldn’t resist trying — Trader Joe’s Simply Lite Dark Chocolate.  Yum!

This “carb safe” stuff contains only 13 grams of carb per 3 chunky squares and tastes delicious, if a teensy bit mealy.  It’s still high-fat at 9 grams per serving. And it does contain maltitol, but hasn’t upset my stomach (yet). I personally found that I don’t need such a fancy extended bolus to cover it.  Worth a try, in case you have trouble dosing for the real thing.

Oh and btw, Sweet N Low candy is on the way. I’m sure the natural foods pundits will have a field day with that.

Um… Happy pre-Halloween, All!

** UPDATE 10/25/09 **

I take it back: that “carb safe” Simply Lite chocolate has upset my stomach. Please refer to the initial portion of this post!