Since I received my letter about passing the board certification exam on Thursday, I was totally in the mood to celebrate, so our New Year’s Eve party plans couldn’t have been better timed. Since the party was BYOB, we stopped at the liquor store, and I chose champagne, more because I wanted to toast passing the exam than passing into 2010, while Jason got beer. As the designated driver, Jason only had a couple of beers early in the evening, so we were both surprised when he woke up sick as a dog on Friday morning. It wasn’t a hangover, but a stomach virus of the horrible kind, which made for a low-key weekend with lots of napping on Jason’s part.

That worked out well Saturday though because Dexter has been having some digestive issues, and luckily I was able to get an emergency vet appointment. As you may or may not recall, Smeagol died after having his own tummy problems, for which we never really got a definitive diagnosis. Although Dexter’s problem seems to be different. He’s doing his business, but his food is passing mostly undigested, whereas Smeagol had ongoing constipation issues for the better part of a year. Dex’s problem is especially concerning to me and Jason in light of what happened to Smeagol. The vet drew blood so they can do a complete reptile blood panel. Hopefully that will yield some answers because I’d hate to put my little monkey through any invasive procedures.

Following the vet appointment, I rushed home to tuck Dexter back under his hidey log. Jason was huddled under a blanket on the sofa, but emerged to find out what the vet had said, and then I was off to meet with the D-moms for coffee before hitting the craft store, supermarket and pet store. I’ve mentioned before how I contacted JDRF several years ago in hopes of building a local support network. Since there was nothing for adults with T1, they gave me the name of a woman who facilitates a local group for moms with T1 kids – the D-moms as I call them. While not the same as hanging with other adults with T1, I’ve enjoyed their friendship, and sometimes they like to get my insight as a former T1 child. Typically, we meet at Panera for coffee – or diet soda in my case since I don’t like coffee – once every few months or so. It’s very informal and low-key. Usually there aren’t more than three of us, but on Saturday we totaled five.

I was late because of Dex’s appointment, so I missed a good chunk of the chat. Once I had my Power Breakfast Sandwich and Diet Pepsi, breakfast of champions, I pulled up a chair to the little cafe table to join in the conversation. The moms who came all have kids in their tweens and teens, so one of the topics that came up once I arrived was alcohol and drugs. Knowing that some of the severe hypoglycemic events I’ve had since October ’08 were precipitated by a little wine or a couple of beers, one of the moms asked me about informally talking to their kids about drinking, thinking that they might be more receptive to a chat on substance use from someone who is (a) also T1 and (b) not their parent..

That got me thinking.

What if there was a workshop for teens, or maybe it would be a series of two or three workshops depending on how it was organized. Content would cover smoking, drinking, drugs and sex, and what it means when you have T1 and you’re faced with choices to engage or not in any of those activities. Obviously, every parent would like to think that their kid will never smoke or do drugs, they’ll wait until they’re 21 to drink, and they’ll be happily married before they have sex. For most people, life doesn’t quite go like that. I know people have their stances about what is or isn’t morally right in regards to those issues, but as someone in a helping profession, it’s not my responsibility to pass judgment. It’s my job to help people understand their choices and clearly think through the possible outcomes so that they can create satisfying lives for themselves.

I know all families have their own ways of approaching this very sensitive subject matter with their children, assuming they address it all. I feel very strongly that it’s imperative to have those kinds of discussions earlier rather than later. What’s that saying? It doesn’t do much good to lock the barn doors once the horse is out of the gate… or something like that. I read an article about the dreaded ‘Sex Talk’ recently. Naturally, I can’t remember where I read it or I’d post the link, but the assertion was that parents tend to have the ‘Sex Talk’ with their kids too late, which is wrought with dangers for any young person, but is an especially treacherous approach for a kid with diabetes. I come from a position of ‘knowledge is power’, and it’s the responsibility of the adults in a kid’s life to ensure they have accurate information. And unlike the information kids will inevitably get from their peers, which is frequently inaccurate and/or incomplete, parents, health care providers, educators, and as the case may be, religious leaders, have the added advantage of life experience and insight to more fully equip youth to make better choices as they face these complex issues, whether it’s a choice with which they’re faced at age 14 or age 24.

I don’t think any such workshop should be a replacement for honest, frank discussions between a parent and child – and I say “discussions” because I think the whole sex, drugs, and alcohol realm should be part of an ongoing dialogue that starts very early, not isolated sit-downs when kids are already on the cusp, or worse yet, in puberty. It would be my hope that such a workshop would nicely complement those at-home discussions. It would reinforce the importance of knowing how to talk openly about these topics, and help them identify strategies for doing so, especially in high-pressure situations. No one wants their kid to be too shy or unsure of how to discuss having or not having sex, beer or cigarettes when it really counts. The more they talk about it, the more confidence they’ll have in their capacity to manage the types of situations in question, and the better attune they’ll be to their own developing belief systems.

I’m still in the contemplation stage, but obviously, even though it’s a little fuzzy, I think it has potential or I wouldn’t be posting it. I imagine that something like this would have been good for me at that age, but I’m curious what you think. Good idea? Bad idea? If you’re the parent of a D-kid, could you envision yourself having your kid participate in such a thing? I know this is delicate subject matter, but it’s important for the health and emotional well-being of all D-kids, so what do you think?

Bob Clarke, former Flyer

When I was growing up, in an effort to relate to my new found insulin-requiring predicament, there were three people everyone told me about who had diabetes. The first was the ubiquitous Mary Tyler Moore. I watched a lot of old sitcoms growing up. Back in the very early days of cable, when lots of people didn’t have it, including my great-grandma and my Nan, when I stayed with them during school vacations, old sitcoms and game shows were the mainstay. Because I watched a lot of old sitcoms, it’s likely that I would have watched the Dick VanDyke Show regardless of Mary Tyler Moore, but because she was one of the three diabetics, I watched it with particular interest.

The second person was Bobby Clarke, hockey player for the Philadelphia Flyers. At the time, I lived in Houston, hadn’t ever been to the Northeast, and never really imagined myself going there, let alone living there. I knew nothing of hockey except the absolute basics – played on ice, there was a stick, and some little thinger pushed around with a stick. We’re talking rudimentary. To be fair though, I didn’t have any great interest in sports, and if I had to pick a sport, it would have been baseball as both my mom and my dad were Astros fans. Still, people told me about this Bobby Clarke fellow, which didn’t have a lot of meaning to me, but it was cool that this famous guy had the same disease I had, and people clearly had a positive association to him.

The third person with diabetes I heard about was everyone’s grandmother/grandfather/aunt/elderly neighbor who was blind/amputated/dead. Uh, thanks. That’s a frikkin awesome thing to tell anyone with diabetes, especially a little kid, you moron. ‘Nuff said.

So, the famous people who were living large with T1 diabetes were Mary Tyler Moore and Bobby Clarke, and they were my only evidence that I wasn’t a complete freak of nature, destined to become my own version of that third elderly, disabled person about which people were constantly telling me. Those two names I would hold tightly in my hand, ready to throw at anyone who hassled me about having a disease. Not that too many people got the opportunity once I learned it better to hold onto the diabetes secret even more tightly. Regardless of the fact that not everyone knew who they were, regardless of the fact that my own knowledge about them was relatively limited, that these people who others recognized and admired had the same disease as me was a little something good when all I could see was a whole lot of bad.

I moved to Philly when I was 12 years old, but never took an interest in ice hockey even though people in Philly are pretty fond of their hockey. Jason, on the other hand, used to be a huge hockey fan. He’s not as into it anymore, but he still enjoys it. We’ve been to a couple of Flyers games when Jason has gotten some tickets from people he knows, and he’s patiently explained the game when we’ve gone to games so I know a little more about it than those aforementioned rudimentary basics – you know, ice, a stick and a puck. I do have a problem with the fighting that occurs because phsyical violence bothers me, but that aside, going to games is a lot of fun.

I mentioned yesterday how Jason and I have been to my local JDRF’s annual ice hockey fundraiser. One year that we went with our parents, there was a raffle for which my mom bought a bunch of tickets. She actually won a hockey jersey signed by Bobby Clarke that she gave to Jason. At the moment, it’s just hanging in a closet, but someday, if we have a bigger house with a rec room, Jason wants to display it. So between Jason being a Flyers fan, Bobby Clarke being a former Flyers player, and the way I identify with just about anyone who’s lived a life of urine testing, BG testing and insulin injections, my initial sole connection to hockey in the form of having the same disease as a former player has expanded a bit over the years.

Bob Clarke's Autograph

Yesterday, I also told you about the two Animas reps with whom I chatted at JDRF’s Outreach meeting this past Monday night. One of them, Bill King, a long distance runner who in addition to his position with Animas, does a lot of speaking engagements and is affiliated with the Diabetes Exercise and Sports Association, has had T1 for about 25 years. As it turned out, he happened to be the guest speaker at my local diabetic teen support group to which I went Wednesday morning. This was the second time I’ve been this fall because I’m scheduled to be the guest speaker in April, so I’ve been hanging around so the kids get used to seeing me. Plus, it’s offered some good networking opportunities as I work to get the word out about the art therapy groups. The December meeting of the support group was held at a local ice skating rink. They have rooms for things like kids’ birthday parties, so the first part of the meeting was in one of these rooms, with Bill speaking, breakfast wraps (bacon!!) kindly marked as being 45g carbs per wrap, and a raffle for 2 pairs of tickets to Flyers games, followed by time to ice skate. Bill talked about the importance of exercising and the like, until the group facilitator rushed out to do something. I had no idea what was happening, but suddenly there was an older man standing in front of the kids alongside Bill.

I suspected I knew who it was based on the way they were acting, but finally Bill introduced Bobby Clarke! I was just giddy! No matter that I’m less than well-versed in hockey, I was surprised at how emotional I felt being in this little party room at a community ice skating rink with a room of maybe 16 teenagers, a handful of other adults, and Bobby Clarke, the famous diabetic professional hockey player.

He talked about playing hockey in the days of urine testing and a single daily injection, having to go by the way he felt to treat lows. He talked about having had a severe low and ending up in the hospital in his late teens, and how that scared him. He talked about treating lows during hockey games with Coke, and how no one noticed or cared because all the other players were drinking Cokes too. He talked about having been a T1 for almost 50 years now, and how he hasn’t had any complications, something he attributes to exercising and staying active. I don’t know how many times I have to hear about the importance of exercise before I actually do something about it, but I can’t think of too many people from whom I’d rather get that message.

Once he was done talking, some group pictures with the kids were taken. Autographed pictures were distributed, and I made sure to grab one. Then as he was leaving, I rushed over to shake his hand and thank him for being such an inspiration. It seems kind of silly, and I never would have imagined myself having such a strong response, but it was unspeakably cool to shake hands with the man who was nothing but a name to me when I was 5 years old, but it was the name of someone just like me who was doing exceptional things despite having T1 diabetes, someone who didn’t allow everyone’s tales of disabled and prematurely dead older relatives stop him from doing everything he wanted and so much more than he likely imagined. It probably doesn’t seem like such a big deal now because people do all kinds of things with T1 now – run marathons, climb mountains, play every professional sport imaginable – but it wasn’t like that when I was a kid, so meeting Bob was an exceptionally cool experience.

It’s difficult to know what to say or how to respond to someone who’s upset. Being with someone who is angry or sad can be uncomfortable, especially when there isn’t an obvious answer or solution. As the person who wants to console someone who is upset, it’s a reminder that we’re only human and we don’t have the power to rectify every issue that life brings. It’s a reminder of our own vulnerability to pain and loss.

I can say that as a therapist, even though helping people deal with emotional pain is an inherent part of providing mental health services, I experience discomfort when I can’t offer a solution to someone. I can’t undo someone’s traumatic experience. I can’t bring a loved one back from the dead. I can’t put a broken relationship back together as it once was. Maybe I can help someone take something that’s fallen apart and reshape it into something new, but there’s still a loss that has to be grieved and hopefully accepted, and even a loss that’s accepted leaves a void. If I don’t tolerate my own discomfort, I can’t expect a client to learn to tolerate and cope with theirs. My sadness and discomfort give me a glimpse into what the client is experiencing so I can better meet their needs as their therapist.

In some ways it’s different, and in some ways it’s the same when it’s someone in my personal life who’s in a bad place for whatever reason. It’s not necessarily my responsibility to guide them towards a solution, but even so, I still wish I could because no one likes to see someone they care about feeling bad. I still wish I had the right thing to say to make them feel better, although, I always try to remember that sometimes there isn’t anything to say at all. Sometimes, it’s OK to just be there and listen because sometimes just feeling heard and understood is enough. To have a friend who cares enough to sit with you while you cry or rant is a great thing. To have a friend who cares enough to just sit with you so you don’t feel so alone in your pain is something we should all be so lucky to have.

Most of us have been upset about diabetes and needed some understanding and support. Many of us have also been in a position to offer understanding and support to someone we knew was frustrated. I try to give encouragement when I know one of my DOC friends is having a bad D day, and I’ve received more encouragement and kind words than I can even quantify. It’s great to be heard, it’s nice to feel understood, and as always, knowing others who “get it” makes such a difference in living with diabetes. It seems that expressing anger, sadness or frustration about life with diabetes occasionally elicits some less than helpful, albeit well-intentioned comments though, which is troubling to me because comparable comments for other heartaches that life brings would be unthinkable.

If someone’s friend dies, is it OK to say, “Don’t feel so bad! At least it wasn’t your child/spouse/parent!”?

If someone were to need their foot amputated, a fear with which most of us can likely identify, would it be OK to say, “Well at least they only cut off your foot, and not your whole leg!” or “At least you still have your other foot!”?

Would you say to someone with a form of cancer that has a high recovery rate, breast cancer for example, “Be grateful you have breast cancer, and not liver cancer!”?

So why is it OK to say to someone who is having a hard time with their diabetes, “At least it’s not cancer!”? In any of the aforementioned scenarios, would those statements be true? Would it really be better to lose one foot rather than two? I think so. Would it be better to watch my friend die than my husband? Well, if I had to choose, I’d be more devastated if Jason died. Do you say those things though? Gosh, I hope not because those aren’t sensitive, comforting, empathetic responses.

It has always bothered and boggled me that people compare diabetes and cancer. It bothers me that there are sometimes heated online debates about which is worse. I’ve never had cancer. I’ve had friends with cancer. I had a friend who died of liver cancer just short of being 5 years clean of breast cancer. My grandfather died of cancer when my mom was all of 6 years old. I’ve also known people who’ve had it, beaten it, and not had any recurrences. I’ve never had an up-close and truly personal experience with cancer, but even if I had, I don’t think it’s my place to compare the two. From my limited perspective of only knowing life with diabetes, they seem like different brands of suck. Ask other people though, amd I think the general consensus is that cancer is worse, but why does it even matter? What on earth is the point of comparing them? At the end of that argument, is there a winner? “Yay! I win! I have the worst disease!”

So why do people say, “At least you don’t have cancer”, to people with diabetes? Maybe there are people who take solace in that, but I find it kind of insulting and demeaning because I think the implied message is that I don’t have a right to feel bad about having diabetes. Most of the time, I’m actually pretty grateful for diabetes, or at least all the positive things that have come of it. I work really hard to foster a positive attitude in myself, and I hope I can inspire the same in others, although I know I’m not Suzy Sunshine about diabetes all the time. However, on those occasions when I get down about it, haven’t I earned the right to be angry, sad, frustrated or fearful because diabetes is a lot more rotten than it looks on the surface? Isn’t there something more helpful to say than reminding me I don’t have another awful disease?

Maybe it’s true that we should all be glad we don’t have cancer. Whether that’s the case or not, I’d like to suggest that there are better things to say to someone who’s having a bad D day, who’s been riding the BG roller-coaster, feels like crap, and just wants a reprieve from the glucose tabs and fog or dry mouth and lethargy, someone who’s in a panic because they’ve found themselves out and about without emergency sugar or back-up pump supplies or test strips, someone who is just tired of the constant misunderstandings about what diabetes is and how it’s managed, or someone who can’t tolerate wasting another minute of their life on the phone arguing with their insurance company. Just because our disease isn’t as bad as another doesn’t mean we deserve to be blamed, judged and ridiculed. It doesn’t mean we’re going to be grateful or feel blessed all the time, sometimes or ever. If I do say so myself, I think that’s just a ridiculous expectation to place on top of all the other expectations that come with managing diabetes 24/7.

What do you say to someone who really doesn’t want to be told, “At least it’s not cancer!”? How about, “I’m sorry you’re having a hard time with your diabetes”, “I can imagine how monotonous and frustrating it gets”, “We all have bad days with diabetes, so remember you’re not alone.” Minimizing someone’s emotional reaction to having a life-long disease that requires more of the patient than most other diseases is not supportive. Invalidating a pretty legitimate and justified emotional response to a pretty tiresome and scary disease is thoughtless and insenstive.

It’s not cancer, but it’s diabetes, and it sucks. A lot. Offer compassion, sensitivity, or kind words. Or don’t say anything because sometimes we just want to be heard and understood, and not made to feel like we don’t have a right to be upset that we have a chronic, incurable disease. At the very least, we deserve that.

* Just a reminder that I’m donating money to two of my favorite diabetes organizations, Behavioral Diabetes Institute for every comment I receive this month, and Diabetes Hands Foundation for every click I get on November 14th, World Diabetes Day.

In case you didn’t hear, my trip to Cali got off to a bumpy start, and I don’t mean the turbulence on the plane – although that never really helps either. My flight was at 6:20AM. Yes, that’s right, AM. That, of course, meant getting to the Philly airport close to 4:20AM. Again, yes, AM. That meant leaving the house at 4, so I got up at 3:10AM. When I am alive and awake at 3:10, 99.99% of the time, it’s because I haven’t gone to bed yet, and speaking of going to bed late, I hadn’t gone to bed until 2AM simply because I’m the most disorganized, neurotic packer on the planet. So there were a confluence of time factors working against me this morning. However, I’m the dummy who booked the flight, so ya, there’s that.

I don’t crawl out of bed at 3:10AM for no good reason though. I’ve been super excited about hanging out with George tonight, and going to tomorrow’s Behavioral Diabetes Institute’s Celebration of Strength Luncheon where I’ll get to meet Suzanne, Cherise and Jaimie, and hear Kelly Close speak. A few hours of missed shut-eye in exchange for so much concentrated awesome is a trade I’ll take any day.

The last time I flew, which would have been the flight home from BlogHer in Chicago, I learned that diabetics can have food and beverage items that the non-diabetic crowd are strong-armed into discarding prior to passing through security. The advantages to co-existing with D are few, so I added this to my list. In light of this revelation, I decided I was bringing juice boxes with me. I have gotten through security like any regular person before by sending my pump and CGM transmitter through the x-ray machine, but I decided to go gangsta style, setting off alarms and bringing the uniforms a-running. Well, it wasn’t quite like that, but it sounds good, right? The pump and CGM on my person meant getting pulled aside and wanded. The lady was super nice though, and having gone through this on enough occasions that I’ve lost count, I just went with it. After she swabbed my pump, I assume looking for explosives, I was released from the little glass booth. Good thing they didn’t swab for my explosively fantastic personality! Hmm, maybe lack of sleep is getting to me a little. Anyway, then one of the dudes wanted to go through my laptop bag. A pocket and compartment later, he pulled out the juice boxes with the sinister Elmo and Clifford the Big Red Dog, terroristic threats if ever there were some, and told me I couldn’t take the juice.

“I have diabetes.” Not as catchy as “a la peanut butter and jelly sandwiches”, but at least as effective. Just like that, he said, “OK”, put the juice back in my bag, zipped it up and I was on my way to the gate.

Once at the gate, I looked down the corridor, in hopes of finding a news stand or food concession that might have some Diet Coke for sale. Since it was still too-early-o’clock, the metal gates and darkness stood between me and every conceivable diet soda option. “Shucks!” Or maybe something that sort of rhymes with that. I sat in resignation, assuming everything would open at 6AM, likely right at the time I would be getting seated on the plane, and proceeded to litter the tubz with my complaints. 5AM, sunshiny, happy Lee Ann is the stuff of urban legends.

Then I heard beautiful music in the form of metal gates opening, and turned to see glorious light shining from the CNBC News Stand behind me. Oh, a Diet Coke, would in fact be in my tired grasp before I boarded the plane. Once the gate was fully opened and I saw other frumpy, tired passengers-to-be loitering at the magazine racks, I made my way to the chilled beverages, and grabbed a soda. I also found some interesting-looking flavored pumpkin seeds that I figured might appease my belly until I arrived at my layover destination, the Minneapolis-St. Paul airport where I intended to get something that resembled breakfast.

Eventually we boarded. I put my rolly bag in the overhead bin, sat in the window seat, and stored my laptop bag at my feet. As I was stashing my soda in the pocket with the emergency airsick bag and the Skymall catalog, my unknown traveling companions arrived and seated themselves next to me, an almost middle-aged woman with dark hair in a red peacoat, and a middle aged man in khakis and a striped button-down shirt. I don’t like to talk to strangers seated next to me. Avoid eye-contact, keep my nose in my phone or a book or Skymall, if necessary, and hope no one tries to befriend me. I’m anti-social. Sue me.

Khaki Pants promptly initiated small-talk with Red Peacoat, saying something about her coat and staying warm I think. She had an obvious northern Middle-America accent, taken straight from Fargo – the movie, I mean, although feel free to substitute the city if you prefer. She even said she was from Brainard, and I might have involuntarily smirked. Then there was mention of how they were expecting their first possible snowflakes later that day or evening in North Dakota. Khaki Pants said something like, “So much for global warming.” Then Red Peacoat responded with something about global warming being a government conspiracy, and Khaki Pants chuckled. So that’s how it was going be, eh?

My eyes widened, I sat up a little straighter, and I reached for my Crackberry to make a comment about how it was going to be a long flight if I was going to have to listen to wherever this discussion was headed for the next 3 hours. My efforts were intercepted though as Red Peacoat incredulously mentioned how she had just heard Obama received the Nobel Peace Prize, and Khaki Pants made a noise like he’d chose curtain #2 and gotten a donkey and year’s supply of sombreros. As I was trying to digest this, and wondering if there was anything I could say that wouldn’t be perceived as rude, but would make them STFU, the conversation turned to health care reform. He said something disdainful that I can’t remember, but so-oh-clearly indicating his obvious disapproval, and she complained about paying higher taxes to pay for other people’s health care.

Goodbye inhibitions. I flipped out. I don’t even remember what exactly I said, but it was something like, “I have type 1 diabetes,” as I grabbed my pump and held it out as exhibit A, “and I need health care reform because my supplies and medications are unaffordable.”

She spun her head around to look at me, and said something about how I should just get a job, and get my own health insurance, and not expect other people to take care of me. Khaki Pants leaned across her to tell me that diabetes care wasn’t that expensive, or something along those lines.

You know when cartoon characters hallucinate, and their heads make that boingy noise as they rattle them back and forth to shake the image out of their minds? That’s more or less what followed on my end of this exchange. I held out my pump again, and said, “I’m on a pump, and diabetes care is in fact extraordinarily expensive.”

And then, he totally took me off guard. He said I should just go back to NPH and Regular because they work just as well as newer insulins, and they’re a lot a more affordable. I looked at him like aliens just crawled out of his nostrils, trying to make sense of what I was hearing, and all I could say was, “What??”

If he said anything after that, it didn’t register. I really can’t describe how upset I was after that. I had to hold back tears as I sat and absorbed their conversation, especially his nonsense about NPH and Regular. I stewed the entire plane ride, thinking of everything I wish I had said, most notably, “Please tell me what medical journal articles from which you pulled that asinine assertion,” and “How exactly are you qualified to make that claim?”

They didn’t talk the rest of the flight. She read a book, I think he took a nap. So at least I succeeded in making them zip it, but the flight was ruined. Not that there’s anything I really enjoy about flying, but the peaceful nap time I had planned was left on the tarmac in Philly. When we landed he struck up a conversation with her again, and get this. I didn’t fully hear what he said, but he said he was a doctor, which at least explained how he even knew NPH and Regular existed – although I don’t know if he was a medical doctor – and she said she was a registered nurse. I was waiting for Rod Serling to stand up and smile from a seat ahead of me, or someone to jump up and exclaim, “You’re on Candid Camera!”

My head is still spinning over it. This is the level of ignorance we face. I said a couple of weeks ago, I’ve been brought to tears, the really messy, hysterical kind, contemplating that people actually exist “out there” who are opposed to health care reform and think so little of us and our quality of life. I sat with tears in my eyes, looking out the window at the carpet of clouds beneath us, trying to wrap my mind around this man’s belief that I should essentially sacrifice my life so his money doesn’t go towards helping people with long-term medical care needs. My life was that expendable to Khaki Pants and Red Peacoat. Our lives are that expendable to Khaki Pants, Red Peacoat, and all the people out there like tham.

Me, Gina, Scott S., & Allison

I am, as far as I know, the last of the Roche Diabetes Social Media Summit invitees to give a recap. First and foremost, I had a great time. The best part of it was meeting many of my fellow D social media gurus. There were some I’d met before, and as always, it was awesome to see them again. There were some I only knew by name or website name who I can now say I’ve met. There were several I’ve considered good friends for a while now even though I had never met them in person, and I can’t stop smiling about having gotten to actually meet them – Chris from The Big D, Crystal/CALpumper from PUMPED Up, George from the BAD Blog, and Scott from Scott’s Diabetes Journal, David from Diabetes Daily… it’s a considerable list of who’s who in the DOC. I don’t know when or how I would have had the opportunity to hang with them, so that right there made it worth getting on that itty-bitty plane for which passenger weight distribution apparently made the difference between staying air-born or crashing in a fiery ball of death. My synopsis is over-due, but here it is nonetheless.

I was there

Kelly from Diabetesaliciousness found me waiting at the departure gate at Philly airport. That was morbidly reassuring because I knew if the little rinky-dink plane on which we flew nose-dived into a cornfield before we landed in Indy, at least I only had three rows of seats over which to climb to find a friend in my last moments of life. Despite storms and some turbulence that had me debating whether or not the fellow sitting next to me would take it the wrong way if I held his hand, we landed safely. Bennet from YDMV (Your Diabetes May Vary) had also been on our flight, as we discovered once we were in Indy, and the three of us met our driver who took us to the hotel.

Once I checked into the hotel, others met in the hotel bar while I dashed to the hotel pool to swim some quick laps. Once I exercised and made myself presentable, I met everyone in the bar, and shortly thereafter, we were whisked off to Maggiano’s for dinner with a bunch of people from the Diabetes Division at Roche. I’m not much of a social butterfly and consider myself to be fairly socially inept, so mingling with the Roche people definitely weirded me out. It was a little surreal to have conversations with people who clearly knew a good deal about us, but about whom we knew nothing. Conversely though, they’d clearly done their homework in order to make the most of the time, and I can appreciate that.

Me & Chris Bishop

After dinner, we headed back to the hotel. Most of us hung out in the hotel bar for a bit, but then it was decided to go hang out in someone’s room. I was tired from traveling and being “on”, so I just went back to my room to get ready for bed. Once I had on my Wonder Woman PJ’s (seriously, don’t all grown woman have those??), I deliberated heading up to hang with them, but decided my butt would be dragging the next day and I’d regret it if I did. Of course, it turns out they had an awesome time – as if it would be anything but – so I will forever regret not taking my single opportunity to hang out with George and Scotty J, et al. in person.

I was one of the few who felt mostly well-rested the next morning as we lugged down our suitcases, checked out of the hotel, and boarded a bus to go to Roche. Of course, most people were mainlining Starbucks coffee, but I’m not a coffee-drinker – don’t like the taste of coffee or anything coffee-flavored, don’t even like the smell – and not too long after we arrived at Roche, while waiting for the few people who hadn’t fit on the bus the first time, someone from Roche mercifully offered me a Diet Coke, much to my diet soda… err, I mean pop-addicted self.

The group shot was taken, and then we were off to a ginormous meeting room for breakfast and introductions. Honestly, a lot of it was blur, so my description likely won’t do it justice. Hopefully, you’ve caught a better review on other blogs though. First, everyone introduced themselves – name, blog, how long they’ve been blogging, how they got started, that sort of thing. That took longer than anyone anticipated, so we were a little rushed with the next part – which was probably my personal favorite – when we discussed how to more fully engage the larger diabetes community in the DOC, especially T2’s. Although T2’s were under-represented, there were attendees actively advocating for T2’s. Each table brainstormed about ways to achieve more participation, and then we went around the room to share our ideas.

Me & Scotty J.

Someone from the Accu-Chek division gave us a short presentation about their call center before we broke for lunch. At lunch there were table topics. One of the tables talked about technology which isn’t really my area of interest, so I sat at another table. Of course, I can’t remember what the exact topic was even though I sat there because my brain has been completely overloaded over the last week and change. However, I seem to recall having a discussion about reaching out to diabetes patients. The Roche rep who sat with us told us how Roche has been working with direct care providers – MD’s, CDE’s – to help them to relate to patients better.

I took this as an opportunity to jump on my little soapbox about how diabetes isn’t just a medical disease. Because the prognosis is 99% in the hands of patients, it’s a behavioral health disease as much as a medical disease. You can train MD’s and CDE’s until the cows come home, but when a large percentage of patients aren’t doing what they’re supposed to do not because they have a knowledge deficit but rather a motivation deficit or other psychosocial factors that prevent them from following through with care, there needs to be the integration of mental health care. MD’s and CDE’s aren’t qualified to provide mental health counseling, but lots of them limp along trying to be a substitute for such since they won’t let mental health professionals into their tight little circle to the extent that we should. Not that Roche can do anything about it, but they have a better relationship with the AADE than I do, so I said I my piece. Shoot me for having my own diabetes agenda.

After lunch, we moved back to the meeting room to discuss what Big Pharma should and shouldn’t do in trying to engage with diabetes patients. I’m sure this was the part of the summit that was of greatest interest to Roche, but I was pretty ambivalent about it. Because we sat in a room with Accu-Chek ads on the walls, a fair bit of the discussion focused on those ads. Unlike most people at the Summit, frankly, I don’t give a crap if Roche, or any Big Pharma company for that matter, wants to use actors in their ads. That’s how advertising works. The lady in the Tide ad likely doesn’t use Tide, and those kids in the ads with the grass-stained jerseys aren’t her kids, and probably didn’t get those grass stains from playing soccer. Personally, I think it’s a waste to get in a snit over their ads, and I think it’s silly to expect a pharma company to make meter and test strip ads differently from the way Madison Avenue makes ads for every single other consumer product. If Roche wants to make ads the way they’ve been making them, I don’t care, but then my life with D started before ads for these products were commonplace, before these products even existed. Rather than brainstorm their way to some other ad campaign to which I’ll never pay attention, I’d like to see them invest themselves in programs that will benefit patients. It seemed I was alone in not caring about their ad campaigns though, and when I tried to say something, it didn’t seem well-received so I shut my trap.

Me & Crystal, a.k.a. CALpumper

Towards the end of this discussion, as Kerri and I were getting ready to scoot out the door on our way to BlogHer, Chris from Diabetic Rockstar wanted to grind his axe with Roche big-wigs over test strip prices. Now, as someone who takes seven oral meds, wears a pump and a CGMS, obviously uses test strips and insulin, and wouldn’t dare think of not having glucagon kits handy, I most certainly have issues with the cost of prescription medications and diabetes supplies and technology. That being said, I didn’t really think that was the time or place to discuss it because in no way could I foresee a constructive outcome given the time constraints and structure of the meeting. However, just like I had my priorities for diabetes-related issues I wanted to discuss, so did others, and hopefully everyone came away feeling like they’d been heard.

Thus, the afternoon session was kind of contentious, but Roche got an earful, and hopefully they found the feedback informative and insightful. As Wil Dubois said in his coverage of the Summit, anger is part of diabetes, and Roche got to see that, like it or not. It seemed many of us got something out of airing complaints, and I’m all for healthy discourse and self-expression.

In the end, I think there’s something to be said for the diabetes community trying to develop some kind of relationship with Big Pharma. I’d have been in my grave 30 years ago if it weren’t for the magic of pharmaceuticals. The problem is, they know that we rely on them to live, and it’s hard to not feel exploited given the nature of that relationship. Going to Indianapolis and actually meeting some of the people with Roche’s diabetes division definitely made them seem less sinister and more human. Not that I talked to a ton of them, but it seemed that many of the people there had some personal connection to diabetes, whether they had it or their kid had it or some other family member had it. I can’t see myself ever truly shaking the healthy dose of skepticism I have for Big Pharma, but in a way, I think those people with a connection to diabetes have a similar drive to help people with diabetes that those of us who participate in social media do, but they’ve found another means of trying to make a difference. I’m grateful that Roche took the initiative to hold the Summit, that they recognized how important those of us in social media are to one another, and they were willing to take a chance to bring some of us together. I hope this is just the beginning of greater things for the entire DOC because as Roche clearly recognizes, we are a force with which to be reckoned.

Me & George