It is now a few days since I've returned from the Roche Diabetes Care Social Summit and my inbox has been flooded with daily bursts from enthusiastic returning bloggers. There's the sharing of all our blog posts as almost 29 people blogged about the conference, of course. And there's everyone's vote winging back and forth on the T-shirt in the works that Chris immediately went to work on to commemorate, I think not so much the working summit, but all of us meeting.
I've been flickered, tweeted, googled and just learned what (#) means. I used to think it stood for "number" but apparently I have been sleeping through the past several nanoseconds. It's a "hashtag," a way to combine tweets on the same topic. But you knew that, didn't you?
This email below came in today from one of my fellow bloggers at the summit and I had to smile reading it as it reminded me that while for a few hours we were heralded as the Diabetes "A" Team, we are all only figuring it out ourselves as we go along, every day, day by day.
"A quick note to those of you on the bus from the (Roche) factory to the airport. I didn't realize it at the time, but I was having blood sugar issues on the ride. All I remember was a lot of talking and laughing. By the time I got to the gate, I was confused and didn't know where I was. The next thing I knew, I was lying on the floor staring up at a group of airport employees, who trying to figure out "who is this crazy man, and why is he sleeping on my floor?" (I'm sure they thought I was drunk) After I muttered the word "diiiaaabetiiic", a nice lady from behind the counter gave me some OJ. When I checked my blood, I thought my meter was malfunctioning. It read 38. I checked again, and my hypo event was confirmed. So...if I displayed any anti-social behavior on the bus, please forgive me."
For those of you who'd like to read more accounts of this unprecedented event that Roche created here are a few of the many:
As you'll notice we all represent a wide range of personalities, interests, opinions, activism, but with one central tenant: We all share living with diabetes in an attempt to help others and also help ourselves. Below my fellow bloggers' photo are all their web blogs.
- That would be me
- Ginger Vieira
- Kelly Kunik
- Fran Carpentier
- Kitty Castellini
- Sandra Miller
- Christel Marchand
- David Edelman
- Brandy Barnes
- Bennet Dunlap
- Lee Ann Thill
- Allison Blass
- Gina Capone
- Jeff Hitchcock
- Kerri Morrone
- Manny Hernandez
- Chris Bishop
- Amy Tenderich
- Kelly Close
- Christopher Thomas
- Scott King
- Bernard Farrell
- Scott Strumello
- George Simmons
- Scott Johnson
- William Lee Dubois
- David Mendosa
- Charlie Cherry
Living in each moment makes the moment, and life, richer
I am trying to be more conscious to "be in the moment." Sitting on the subway yesterday, staring out the window (there are a rare few moments where the subway is overground) I was thinking that what happened yesterday, last week, a moment ago is over and what will happen in the next moment isn't here yet. So let me see if I can just be present now, in my body, looking at what I'm looking at, smelling what I'm smelling...well, maybe not on a New York City subway, but you get the idea. Of course the exercise was not in the analysis, but what followed, to "just be."
In all honesty, I'm not sure I completely believe that there is only this moment. Part of me thinks whatever has already occurred still exists energetically in the minds, memory and maybe even cells of our body. But I do believe that if I can be more present in this moment, that my moments will be fuller, richer, calmer, more content, and that like threading a necklace of beads, if each bead is high quality the end product will be beautiful. For I do unequivocally believe that the quality of each moment creates the quality of our lives.
So today I'm going to try to be more present when washing the dishes - to feel the soap suds slime over my hands, enjoy how clean the dishes are becoming (and not worry about the next post I have to write). And I will truly listen to whomever is speaking to me and quiet my own thoughts racing to and fro in the background. And I will attempt to do this throughout the day.
So now I'm going off to the Motor Vehicles office to renew my license. Yes, I'm going to spend my precious moments marveling at the ancient, dilapidated room I'm sitting in, chuckling at the 3,000 people in energetic discourse with the ten civil servants behind protective glass, savor the sweetness of the peach I'll be biting into to bring my blood sugar back up, and smile when I emerge five hours later into the predicted rainstorm for this afternoon that my license is good for another eight years.
I just returned from Indianapolis late last night. After an almost harrowing touchdown, the end result of a storm that battered New York City all afternoon and evening, I was returning from an unprecedented event: a major dialogue between giant diabetes manufacturer, Roche, and 29 diabetes bloggers. Roche, the leader in glucose testing through their brand, Accu-chek, and testing strips, invited us to their Corporate Headquarters to see how to better use we bloggers to get vital learning and information to more patients, those who are online and those who aren't.
Like a first date, we were all on our best behavior at the evening reception cocktail party and dinner. While we bloggers were impressive in number it seemed there were as many Roche executives present; each side felt confidently relaxed. The next day we were facilitated by Amy Tenderich of DiabetesMine (a few more photos) and Manny Hernandez of TuDiabetes to explore how to widen our voice and reach. Some interesting ideas emerged:
- A go-to diabetes web site with a source list for all things diabetes, including blogs categorized by search-need ie: racial identity, young women, parents.
- A national call to action on Diabetes Day, November 14th, like, "Today I will test three times."
- A collective list of diabetes blogs to be included in the resource packet typically handed to new patients in hospitals and doctor offices
- A diabetes czar in the Whitehouse
- Training health care providers to work with patients to empower them to take more responsibility as their own care givers
A significant working session profered what pharmas MUST NOT Do when using social media, the 3 s's: Spam, Selling and Self-promotion and what they MUST DO, the 2 e's: Earning trust and Educating.
Other comments to note were of the 27 type 1s in this group, we all felt ads that show meters with perfect people and perfect blood sugar numbers like 101 and 104 sooooo put us off. "Get real" was the day's battle cry. One blogger offered, "Today I woke up at 301 and felt crummy! But my meter let me correct and get to work on time."
Mid-afternoon we were treated to a manufacturing tour and got to see just how those little test strips get made and boxed, and once I got over wearing the old 'Roseanne' hairnet helmet, I enjoyed it. I was also touched by the people on the manufacturing floor who have what look like grinding automated jobs and yet smiled and waved to us like they were greeting family members.
As our date drew to a close, we're not exactly sure if Roche will call again. They did get sprayed with some heavy artillary over the high cost of test strips and why profits seem to come at the cost of many uninsured patients' health. We wanted to know why does it take so long for new products to come to market? And the big question: Why are meters allowed to be up to 20% inaccurate? It didn't help that Roche's Senior Marketing Manager was not at liberty to answer these questions due to FDA regulatory policies.
Overall, I believe the meeting was successful because it began a conversation and helped put a face on big corporate for us and internet voices for them. And I do believe this was an earnest attempt to provide better service to their tapped and untapped customers, and yes, profit from that. But then I don't see the two as mutually exclusive. And so I commend the Roche executives we met for braving internal hurdles I can only assume were there, and I hope more companies will pick up the gauntlet and see the value of tapping into this, and similar, very smart networks of professional patients on the ground.
Would it surprise you to know that the meter you use to test your blood sugar may be wrong by 20%? And that a 20% margin of error for many patients results in seizures, unconsciousness and coma?
This past June the international group that sets the standards for meters was pressed to tighten them, and we can only hope it's happening according to the recent article in the New York Times, "Standards Might Rise on Monitors for Diabetics." Officials said they would keep pushing until monitor accuracy improves.
But it makes you wonder how those who oversee meter accuracy could be so casual and negligent in the first place. Insulin is a dangerous drug, take too much you could die, take too little and high blood sugars will lead to complications; we're all depending upon our blood sugar readings to keep us from harm. If my meter shows 100 mg/dl my blood sugar could be 80 or it could be 120. 80 means I'm close to caving and may need to take some extra sugar, however if I'm really 120 extra sugar will push me into high blood sugar.
Something as simple as Tylenol or Vitamin C may also give false readings. In a world where we can land on the moon and talk into a wireless phone and get your email on a two inch screen, can we not create meters that give accurate blood sugar results? A government study revealed among five popular meters, results varied up to 32%! Two meters, both made by Bayer, differed by 62 points!
Really I find it shocking that with diabetes on the rise and health care costs skyrocketing, we still don't have meters we can assuredly rely on.
This past Monday, July 13, was the release date for my new book. I was in San Francisco visiting a friend on my way to Medford, Oregon to give the motivational presentation I give to fellow patients.
My friend and I went to her local Barnes & Noble to see if they had the book in stock. Sure 'nough there it was sitting demurely on the shelf, just waiting. Let's say it was a quiet thrill. After spending last year writing it, I feel quite proud of the result: Great information, a true education in the compelling format of myths/truths, and actionable steps from 21 leading diabetes experts. Everything you need to know. Also, fellow patients' "lessons learned" and my own experiences from traveling to an ignorant patient to giving patient presentations. If you've read a little of this blog, you'll recognize the empathic voice which is the tone of the book. But, of course, for the scintillating back story, just click here.
On the plane on my way to Medford I sat next to a woman who shared with me that her husband had diabetes but then lost nearly 50 pounds and doesn't have the symptoms anymore. She too is looking to lose weight knowing her weight makes her a candidate for diabetes as well. She felt a little more inspired to manage her diet after talking when we deplaned in Portland.
The hotel van driver who picked me up at the airport in Medford told me everyone in his family has diabetes. I would guess his age at about 22, but I didn't have to guess that his chances of getting diabetes are huge, given he's significantly overweight and it runs in his family. I think I opened his eyes.
After my diabetes presentation, I sat in the diabetes center's office waiting for my ride back to the hotel. A young girl, about seven, and her parents walked in. I suspected she had type 1. I had to test my blood sugar as it often rises from the nervous stress of giving a presentation. While I don't feel nervous, it's almost always an automatic response. The little girl watched me intently check my blood sugar. Then I took out my syringe to give myself a small corrective dose. I caught her eyes again watching me and I said, "You do this too?" She smiled and nodded. I walked over to her and her mother and said, "You just take care of it and you'll be one of us, a real superhero." Then I showed her my bracelet and asked if she could read the words on it. She read aloud, "Diabetes Pride." I said, "those are good words to remember."
When I was younger I wanted to help people believe in themselves. I knew my talents were writing, illustrating and speaking and that somehow I would use those. I just never knew it would be about diabetes.
For the first time since I don't remember when I left my apartment and went around the corner to my local pub restaurant, and forgot to bring my insulin.
Wow, it didn't even dawn on me until still seated at the bar after a glass of wine and an appetizer, the entree came and my husband said, "Aren't you going to shoot up?" Oh, my gosh, I thought, not in a bad way, no, sort of a tickled how could I be so mindless way, "I forgot to bring it." I answered the look of concern on his face with, "That's OK, the wine will drop me and I'll shoot up as soon as we get home." Home only being two blocks away.
Then I sat back and enjoyed the absolute freedom that "normal" people experience every day, actually several times a day. No calculating carbs, no pulling out the syringe and vial, no turning away to give myself an injection, no wondering if I just took the right amount of insulin. No afterthought that I'd have to check my blood sugar two hours later to see. No making a mental note when two hours later would be. No, I just sat back and enjoyed the utter, overwhelming freedom, and the incredible wiener schnitzel in front of us in this super Austrian pub.
I don't know what caused me to forget my insulin, although I can guess. I was doing a million things before I left the apartment, my mind was equally in a million places, forward and backward, and I had just had an upsetting phone call with a friend. In part, that's what prompted the last minute desire to go out for dinner; I needed to get out of this tiny apartment and change the view and my head.
But whatever the reason, it's amazing that forgetting my insulin doesn't happen more often, like once a day or once a week, really, and so I have to give myself credit for the 99 times out of 100 that I remember to bring my insulin with me.
So even my mistake gives me justifiable cause to pat myself on the back for all the times I succeed. OK, here's the part where you laugh with me.
Last week it hit all the news wires that obesity in children and adults has not only not abated, but grown ever bigger, greater, huger, wider.
Childhood obesity has tripled since 1980 and most schools don't meet the local FDA requirements for planned menus. 23 states have increased in obesity with Mississippi, Alabama, Tennessee and West Virginia topping the list. Colorado and Vermont are our thinnest states, the year-round active outdoor culture sighted as a major reason.
But I have another thought why people in this country are fat beside the usual culprits -- stress, status, poverty, availability of food, super-sizing, processing and illiteracy. It first came to me while in Europe and I am reminded every time I return: Food there has so much more flavor. In Holland, for instance, tomatoes drip down your arm with their sweetness and even the lowly brussels sprout comes packed with layers of chewy deliciousness. Largely across Western Europe food is grown in richer, less fallow soil, on farms only miles from where it is then sold, only days or minutes after it is picked. Freshness is a flavor all its own. Farming is a prideful occupation and the higher price of food funds higher quality growing conditions.
I say that if our food had more flavor, we'd be satisfied with less. We could put down our forks when we should, and feel fed. Think about it. If what you ate was flavorful, delicious, nutritious and wholesome, granted, if that was a rare treat you might over eat, but if that was the character of most of your meals, I believe you'd reach your level of satisfaction and feel satiated with smaller portions. In contrast here in America, I believe an unspoken reason why a great majority of people overeat is because, like on a treasure hunt they are foraging for flavor which never comes. And, there's a hope that if they keep eating, eventually taste and satisfaction will arrive.
Whether it's two thin slices of tangy cheese on a that-morning-baked yummy crunchy seeded roll or a light as air soul-satisfying four-forkful sliver of pastry ordered for the table or peas shot through pod to pod with green, earthy deliciousness, less food on your plate is actually much more satisfying when it actually has taste. Food as nature intended.
I just returned from two weeks holiday in London and Holland visiting friends and family. It was truly a fabulous trip, rich in every way, unfortunately also including the almost constant and frustrating lack of control I had over my blood sugar.
I have decided perhaps there are five basics to managing diabetes: food, activity, medicine, stress-management and routine.
Here at home what I eat, including my carb load, and when I eat doesn’t vary very much, including an hour walk I usually take in the morning. Checking my blood sugar at home, usually four or five times a day, I pretty much get the blood glucose numbers I expect.
But, whoosh, get on an airplane and everything goes out the window. Just how do you manage your blood sugar when confronted with the following:
- Airplane food, and I use the term “food” loosely. Coming home they called something oozing from its little box, “quiche”
- Losing five hours in your day
- Jet lag that mucks up your mind
- Breakfasting on a cheese sandwich on country slabs of thick dense bread (delicious but awful for my blood sugar). There's no way to know how many carbs it contains and I won't be caught dead paying 30 euro ($47.40) for a hotel breakfast. I've also discovered the muesli I love that comes in bags with no carb count, or at the breakfast buffet where breakfast is included in the cost of your room, requires three times the insulin my at home oatmeal breakfast requires.
- A two hour bicycle ride through eye-popping rural Holland that exhausted my blood glucose bank for two whole days causing constant lows
Well, you get the idea. Getting blood sugar numbers I did expect, checking pre and post every meal, was the exception, no longer the rule. I was under- or over-guessing my insulin with so few clues to go on. How do you shoot up for bread fresh baked next door at the bakery rather than bread at home that comes as a plastic-wrapped loaf from our over-refining processing factories?
I have no great wisdom to share how to do this better for I don’t know. An abundance of restaurant meals and lack of routine will always be my Achilles heel and my only recourse currently is to test frequently and correct. Further, as much as long- acting and short-acting insulins have released most of us from having to eat at a certain hour, guessing the match between insulin and not your usual foods, for me is a Herculean mental task.
Then, admittedly, when cows, sheep, ducks, pastures and canals beckon me to turn to my sister in law after 75 minutes of cycling and say, “Let’s go just another 45 minutes,” I now know better. That will require less insulin for the next 24-48 hours. Boom, those were mighty drops! Six years ago I stopped cycling when I removed my bicycle from my closet as my husband’s clothes moved in (there’s nowhere to put a bicycle in a tiny city apartment). And I realized riding around New York City was just as likely to get me killed as well toned.
So, I’m home now and while a piece of my heart is still in Europe, the piece of my head that’s going to make my morning oatmeal, spinach salad for lunch and fish and veggies for dinner is feeling so relaxed by merely not being on vacation.