Well, this is depressing

In an attempt to standardize how doctors make the difficult decision of who should receive treatment during a pandemic or disaster, several task forces have worked together to identify which patients should not receive extraordinary care in situations where resources must be doled out among large numbers of casualties.

On the list of folks who don't make the cut: "Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes"

So, if the idea of complications hasn't scared you into controlling your diabetes on a daily basis, you might consider this a new motivator.

Read the whole story here: http://www.fredericksburg.com/News/apmethods/apstory?urlfeed=D90FH1C00.xml

Moving

My parents sold the house that I grew up in this afternoon. It didn't come as a surprise - in fact it took several years to sell. It was a big old gorgeous drafty full-of-character Victorian in Flourtown, PA. It was a unique and wonderful house and terrific setting for a home. Three houses down from a state park for day long adventures, yet also just a short walk to stores and part-time jobs in the other direction. Over the years, the house was repaired and improved by my father and transformed into a beautiful showpiece by my mother.

I spent the weekend helping to organize and arrange and pack. My brothers and sister all came, too, and it was wonderful to be all together. It was actually kind of nice to be there without spouses and children, just the four of us again. Lots of good stories and memories and a whole truckload of feelings that we all worked very hard to mash down so we could get done what had to be done.

I wrote about the move, and submitted it to Six Sentences. Not only was it accepted, but the blog owner was kind enough to post it today, the day they sold the house they bought 36 years ago.



photo by peter gregorio

Camp Barlin? Camp Joston?

The word is out!

The Joslin Diabetes Center and The Barton Center for Education have announced that Barton will take over the management of the Joslin Camp.

The Clinic will still own the camp, but the administration, fundraising, camper recruitment, etc will now be handled by the folks at BCDE.

This is actually a bit of 'coming full circle'. In the early days of diabetes camping, when Barton and Joslin were pioneering the concept of a 'hospital in the woods', the Unitarian Universalist Women's Federation handled the management of both camps, with the Joslin Clinic contributing the medical supervision.

It was always a bit odd that, in this modern day, the Barton and Joslin camps remained separate, single-sex entities. It was also, I think, inefficient. This merger represents a great opportunity to streamline purchasing, hiring, sharing of information, and fundraising efforts to benefit the campers of both organizations.

Though the single-sex aspect seems quaint to many, I always liked the fact that the campers and staff could relax and be boys and girls without much of the distraction of the opposite sex. (Yes, I know I married a Joslin boy, so obviously there was some distraction going on, but it was nice to limit that to dance nights and the rare occasion when you could schedule your time off at the same time as your crush.) I have no idea what this merger means for that aspect of diabetes camping in Massachusetts, but I hope that some of the autonomy is preserved.

Beyond that, I think there are a ton of 'pros' to this partnership. Aside from the aforementioned efficiencies, I think each camp will gain from the other. I look forward to seeing how this will all work out. Good luck to all involved!

(we do need a re-write of "We're from Camp Barton, and our tribe's the best tribe, we fight the Camp Joslin, they're seven feet tall!)

Appeal

Many of you have heard me and others in the O.C. rave about our diabetes camp experiences. Those of us who attended (or staffed, or volunteered) sing the praises of the camping experience. We savor the comeraderie, the education (cleverly disguised as sports and games and goofy fun), and the empowerment that comes from being away from home for two weeks or a whole summer.

And most of all, we cherish the friendships we made at diabetes camp, as we monitored and injected and snacked on nabs with our peers. We met kids and teens just like us, and the bond is often unbreakable.

I, personally, have an address book full of friends with non-functioning islet cells. They are friends who I can call when something d-related goes wrong, friends with whom I can fall easily into conversation even after a long time apart, and friends who have stood by me through life's major events, good and bad.

But there is a darker side to these connections. Actually, it is not so much dark as it is reality. When camp alumni gather, we often skirt the topic, or (at the very least) discuss it with a heavy heart. With such a wide circle of friends with diabetes, I know several people who have battled complications and even lost their life to diabetes. I joined the diabetes world just after the advent of home blood glucose monitoring. Many of my camp friends were diagnosed with diabetes well before me, and they lived many years with clumsier tools. My own husband had diabetes nearly 20 years before he owned a meter. Some I've known have simply not had the good luck to avoid complications. I see them struggle with blood sugars that won't behave, a challenge made worse when complications creep in.

Last November, a beloved camp alumnus passed away at the age of 50. Unexpectedly, while undergoing treatment for kidney issues, she was taken from her family and friends by diabetes. Our camp circle is overshadowed by the loss.

Clearly, the camp connection is not just about being upbeat and hopeful, it is about joining together to face the sometimes dark reality of diabetes. Her good friends have formed a team and are planning to participate in the upcoming Barton St. Patrick's Road Race in March. Pledges in her honor are being collected, with the money intended for extra fun for the kids who attend camp this summer. Because, even though she died much too young, we all recognize that she fought a tremendous fight and was armed, in part, with the love and support of her camp friends.

It is an excellent way to honor her memory and her camp connections. There is no better way to mark the incredible bond of friendship that forms among children with diabetes then to enrich their camp experience. To ensure that they learn to take care of their diabetes while playing a fierce game of field hockey, or planning a silly talent show skit. To allow them to lie on wooden bunks, whispering about the things that dominate a young girl's life, in a log cabin that is stocked with meters and glucose tabs and peanut butter nabs, overlooking a charming little pond.

Please consider joining me in a donation to The Barton Center in honor of Cathy Curran. If you donate, please indicate "Race/Walk: Team Gumby" on your check or online donation. Contact information for camp is available here: http://www.bartoncenter.org

LOL

Here's a little shocker for ya. When I type LOL in an online chat, or a cell phone text message, most of they time I am I not actually laughing out loud. I know, shocking! Am I the only one who abuses LOL this way? In fact, I think I'd actually forgotten what it truly means to laugh out loud. To laugh so much that your face hurts and you can't catch your breath. To laugh so hard that you just might actually pee your pants (if you've had a few kids and are pushing 40, like me, that's more of a possibility than I'd like to admit). For all my LOLing and LMAOing, those moments of true hilarity are pretty far and few between these days.

Which is why driving down to Williamsburg last Thursday night to attend a Four Bitchin' Babes concert at the Library Theater was such a big deal. Thanks to my brother, whose good friend Deirdre Flint is an amazingly talented folk type singer/songwriter, I had two tickets to a performance by the Babes. I have to let my crazy show a little here and tell you that, normally, I'd talk myself out of such an adventure. It's too far, it's a school night, who'd watch the kids, who could I invite to go with me... but there were tickets waiting so I got over myself, invited my friend Stephanie, and made the trip.

The current Babes lineup includes Sally Fingerett (a founding member and the group's newest Newlywed), Debi Smith (a killer Soprano and the mom of a child with Asperger's Syndrome), Nancy Moran (a self-described "musical late bloomer" who who struck me, instantly, as someone I'd like to be friends with. But not in a weird-audience-member-stalker kind of way) and Deirdre (who is hysterical in a scary smart sort of way... I mean, really, who would think to write a love song to Food? Genius!).

By the end of the first song (an homage to women enduring hot flashes) I had tears in my eyes from laughing. By the end of the first set, I had been rocked with laughter, had been moved to tears, and had decided that, if the devil ever does come knockin', I'd trade my soul to be able to write and sing songs like any one of those women on stage. After an intermission to allow us to catch our breath, they returned to the stage and outdid themselves, with a new (hysterical) group song, individual performances that included a pitch-perfect operatic solo by Debi (ok, what do I know about pitch-perfect besides what I hear from Paula Abdul and Simon? But it was damn good!). Deirde closed the show with "The Boob Fairy", which had us rolling in the aisles (because "we've all felt the pain of being dissed by one fairy or another"). The group returned for an encore with "Viagra in the Waters". That hilarious tune provided bonus humor in the form of the reaction of some of the men in the audience, particularly the gentleman right in front of me who (I swear) froze like a deer in headlights when he realized what they were singing. It was, as they say, priceless.

The Babes may be coming to a town near you. I strongly suggest you get yourself some tickets, corral a few friends (women of any age and/or men who can take a joke)and treat yourself to the ultimate Mom's night out. You'll thank me for it!

P.S.

Just a thought in response to comments here and elsewhere:

I absolutely believe that Halle and many others may have been misdiagnosed or not as specifically diagnosed as they should have been. And the long-time public wavering of Ms. Berry on what kind of diabetes she has probably reflects a certain amount of confusion on her part and on the part of her medical providers.

But my point is that soundbite statements like the one she made on Bravo (not A&E, I stand corrected) just add to the confusion! If you actually have Type I diabetes then you can't wean yourself off insulin. If you can wean yourself off insulin, you never had Type I. That's what I believe.

I've already heard from one well meaning but clueless Bravo-watching acquaintence that it's possible to wean myself off insulin. I'm thinking of making a tee-shirt that says, "I don't have Halle's Kind of Diabetes".

An Open Letter to Halle Berry

Dear Halle,

It's great to see you making the circuit of talk shows, walking the red carpet, looking extra gorgeous and clearly enjoying your pregnancy. When news of your good fortune first came out, I of course wondered if you'd choose to publicize the fact that you have diabetes and that, having diabetes, you had to take extra steps to ensure a healthy pregnancy. Perhaps some strong media mentions of the fact that women with diabetes can and do have healthy babies all time these days.

I wasn't terribly surpised when you didn't take that path and I don't fault you for that. Just because you have diabetes and are famous doesn't mean that you have to shout about your medical condition at every turn. You don't owe it to us. Though I will concede that it would be nice to have such a beautiful, vibrant spokesperson (no disrespect to Wilford Brimley).

Silence is one thing. Misinformation is another. Telling an A&E audience that you had type 1 but weaned yourself off insulin and now consider yourself as having type 2, well... that's just wrong!

If that's true, then please share your cure! Tell the researchers! Tell the world! Why are you keeping the details of this miracle secret?

If in fact you have type 1 diabetes and are not injecting insulin, and you are not dying from wildly out of control blood sugars, then you do not have type I and you never did.

Please, stay silent on the subject or get your story straight. I'd much rather hear you say "I don't discuss my pancreas with the press" than hear from a mis-informed but well-meaning acquaintance that they heard I can stop taking insulin.

Respectfully,

Kassie Gregorio Palmer
Mom with Type I diabetes

$0.00

That's what I owe Minimed. After waiting them out for nearly a year before the credit promised to me last summer appeared on my statement, I went ahead and paid the balance. I'd tell you the whole ridiculous story, but it tires me out. Let's just say it involved shipments sent to my old address, reps telling me that I was wrong about the box marked 'Medtronic' that my old neighbor was holding, billing that happened way after my FSA year closed out, and repeated (unfulfilled) promises to get back to me with information.

I just received my third bill for $0.00. My insurance has fulfilled its obligation and the remaining balance is my responsibility. "Due immediately".

I called Billing today and was told that the rep would "ask her manager if he could get them to stop sending me bills."

No, "sorry about that Ms. Palmer", no "well that's just silly, let's get that cleared up". Nothing. Just a promise to *ask* if it could be fixed. Not even a promise to fix it.

Sigh. Seriously, I think the only way I'd ever become a Medtronic customer again is if they actually cured diabetes.

Resistance is Futile!

I finally got off my kiester and joined tudiabetes.com.

I will confess that I have no myspace page, no facebook page, none of that cool stuff all the hip kids are into. I'm old. So sue me.

Tonight, I paged through the members list and asked everyone who I thought I knew to be my friend. If you're there and I somehow missed you, just remember I new at this social networking thingy, and send me an invite.

Oy! What will they think of next...

S'Mores

4 Keebler Graham Cracker squares = 20g CHO
1/3 of a Hershey bar = 8g CHO
2 Marshmallows, slow roasted over a fire built by Jake = 10g CHO
Bolus = 4 units of Novolog
Picture Perfect Vacation Moment = Priceless

A Different Amtrak Story

I was looking into the recent Amtrak situation, using a Google news search, and I came across an editorial in the Washington Post by a regular Amtrak rider. It seems she experienced a loud, crowded unpleasant trip, complete with people eating and talking on cell phones. Surprising, no?

The kicker is that her final complaint - the apex of her indignant rant - was that the dorito eating woman next to her "pulled out a syringe, lifted her shirt, and gave herself a dosage."

After I put the pieces of my exploded head back together, I began to read through comments to see if my response had already been given. And that is when things got scary. Lovely comments about eating our way to diabetes, taking ourselves to the (oh so pristine) train bathroom to inject, and not inconveniencing people with our problems.

I guess it's good to be reminded once in a while just what some in the general public thinks of people with diabetes. And there were plenty of good rebuttals in the comments. But it was a bit shocking to read some of the feedback. I was going to copy some of the most obnoxious quotes, but rather than give more press to assinine comments, here are some of my favorite comebacks:

"...if you didn't like seeing her inject herself, then DON'T LOOK! Excuse me as I'm now off to a stall in the men's room to take an asprin."

"I were a diabetic having to do 5-10 shots a day and somebody asked me one of those questions, I believe my standard reply would be: I'm sorry. This is my allergy shot. I'm deathly allergic to people who can't mind their own #@$%^&* business."

and the coup-de-resistance (I had to go look up this word)...

"exactly how does taking an injection impede on your personal space, you self-righteous troglodyte?

maybe amtrak could charge $20 for the privilege of not dying from hypoglycemia and shielding your delicate eyes."

We public self-injecters are a funny lot!

edited to add: And my readers are a delightfully sarcastic bunch. No wonder we get along so well!

News Quote of the Day

I love the press coverage that diabetes gets during the week of the ADA scientific sessions. Today, while reading an article about a study that shows elevated blood glucose during pregnancy increases risks of macrosomia and infant low blood sugar (among other things), I came across this gem of a quote:

"The question is, what is the best blood sugar to have? Probably there is no threshold. The lower, the better," said Dr. Joel Zonszein, director of the Clinical Diabetes Center at New York's Montefiore Medical Center.

I can't believe that Dr. Zonszein actually said that - I'm assuming he was misquoted or quoted out of context.

No threshold, eh? The lower the better? Hmmm. I don't know as much about gestational diabetes as I do about type 1, but I can't imagine that there's NO threshold.

You all know I'm a proponent of careful decision making for women with diabetes (type 1 or 2) when it comes to pregnancy. But I also believe we should pursue lofty blood glucose management goals, but also remember that our brains, carb counts, and medicines fall short of a functioning pancreas every time.

Is 30 the New 20?

I just talked to an old camp pal of mine who is a born-again diabetic after a visit to the eye doc revealed some issues. He mentioned that he's had D 30 years.

It used to be that docs felt that if you'd managed to get thru 20 years with diabetes, complication free, you were not as likely to develop any problems (assuming continued diligence, etc). John's Joslin doc has said this to him more than once. John has 39 years with diabetes, and no complications so far. Nearly half of those years were lived without such fancy things as humalog insulin, and a solid third of those years were spent without home blood glucose monitoring.

Having heard about complications at the 30 year mark from more than one person, I began to wonder if 30 is the new 20. Does 20 years with A1c's in what was considered the acceptable range ten years ago do the same amount of damage as 30 years with tighter control? Studies that show tighter control reduces risks of complications would certainly support this theory.

I like to think that, diabetes-wise, good days buy you more days (or at least make the days you have more enjoyable). But I do know that other factors play into the development of complications. And time, it would seem, is one of those factors.

Kellogg's Strikes Back

My good friends at Kellogg's are in the news these days for a bold response to demands that they stop marketing foods with poor nutritional values to kids. They've announced their plan to re-work the content of their cereals and other products and, if they can't make a good tasting product that meets nutritional goals, they'll stop marketing it to the under-12 crowd. This includes the obvious media campaigns but also the use of toys and branded characters to attract buyers.

(As an aside, I hope they don't drop their Pirates of the Caribbean tie-in. I know many moms who've been enjoying gazing at Jonny Depp/Jack Sparrow over their morning meal.)

The Campaign for a Commercial Free Childhood recently targeted Kellogg's and Viacom (Nickelodeon) with a lawsuit demanding that they stop marketing junk food to kids under eight. Apparently, they chose Kellogg's and Viacom because they are industry leaders. Going after Tony the Tiger forces the big K to step up and set an example for others in the industry - hopefully that annoying Trix rabbit and Lucky Charm dude will follow suit.

My husband works for Kellogg's, so I'm obviously biased about their business. Because John is an employee, we have a huge variety of Kellogg's cereals in our house. Jake tends to choose Rice Krispies and Corn Flakes over all the sweetened varieties. Ryan vascillates between Corn Flakes and Frosted Flakes, which is fine by me! And I still bolus early for a bowl of Froot Loops now and then.

Studies Have Shown...

Here's a study with which I can get on board.

As I've long suspected, studies of ER visits and surveys of pediatric orthopaedists have shown that Heelies are bad.

They result in broken bones, sprained wrists, sprained ankles and even concussions, primarily because they are worn with no safety equipment. C'mon - have you ever seen a kid whiz by you at the airport, or mall, wearing Heelies and a helmet? Even though the manufacturer recommends safety equipment, in a classic CYA move.

In addition to injuries from falls, "Dr. Dominic Catanese, a foot specialist at Montefiore Medical Center in New York, said balancing on heels can strain feet and Achilles tendons".

This just seems like common sense to me!

"Heelys in April said a study it commissioned shows that their shoes have a safer injury rate than skateboarding, inline skating and even swimming." See? You can make a study say anything.

I'm the world's most permissive Mom, but I've held firm in my refusal to let my kids wear heelies. Now I have scientific support (not that my kids will care!)

On the Other Hand

I've spent a fair amount of time recently defending the right of a person with diabetes (or a couple with diabetes) to make their own damn decisions about marriage and procreation. I have no problem with a person with diabetes saying they choose not to have children. It's their choice. But I do take issue with the fact that people think it's ok to comment on other people's decisions. Toss out a blanket statement like xyz group of people "should never have children together. That is morally wrong" and you're going to get me started.

And (as evidenced by this *third* post on a topic that's been beaten to death), you don't want to get me started.

Because I tend to perseverate.

So I've been ranting to anyone who'll listen or read, boldly defending my right to pass on genes that might be considered by some to be faulty.

In an odd little twist of fate, I found myself in a conversation last week about donor sperm. Specifically, we were discussing just what aspects of a sperm donor profile would cause one to choose (or pass) on a donor.

Turns out, when you take love out of the equation, everything is fair game. Health history, parental and maternal health history - heck, even aunts and uncles come into play. Personality traits, likes and dislikes, and GPAs can be considered.

I stated that if I had to choose donor sperm I'd seek out someone who is not too tall (because I'm already tall, and tall plus tall could equal really tall, and trust me that's tough on a teenage girl) and someone who could sing (because if I could sell my soul to the devil it would be for the ability to sing). Of course, I'd be just as likely to end up creating a very tall, tone-deaf child instead of my cleverly designed average height American Idol.

But, truth be told, I'd probably set aside the files of donors with a strong family history of any number of conditions, including diabetes.

I guess that it's a good thing (for me, and for others with potential "flaws") that we don't all fill out 6 page health histories and personality surveys before a first date!

Please feel free to comment and describe your perfect donor!

Police

The Boys in Blue have done it again. According to an article in today's Boston Globe, the police department in Northampton, MA will not hire a person who uses an insulin pump.

I'm guessing that the theory is that injecting insulin could lead to low blood sugars, which could compromise a person's ability to react, make decisions, fire a weapon, etc. They will hire you if you take injections, depending upon the severity of the diabetes. I'm guessing that this means they'll hire a person with type 2 who injects insulin once a day.

I hope the publicity surrounding this particular case will cause the Northampton police to increase their understanding of diabetes and how it is managed. Kudos to the young man involved for fighting the policy and drawing attention to the situation!

All Snarkiness Aside

I've actually been holding back on responding to some of the comments that have been floating around concerning diabetes, marriage, dating, and parenthood. The idea which hit me the hardest was also the one I found the most ridiculous, and it came from "Sarah", who was commenting on a post at diabetesmine.com. Sarah wrote, among other things:

"I also agree that people with diabetes should never have children together. That is morally wrong. Why would you do that to a child?"

The concept is offensive, but I initially sighed and responded only briefly, merely referring to an old post of my own about whether or not people with diabetes should procreate.

I thought that much of what Sarah said was extreme, and her choice of words (in addition to her stance on the subject of dating) just struck me as ridiculous. Almost not worth getting riled up over.

Then, the other day, I got caught up in some posting and commenting going on over at the blog "Wife of a Diabetic". Clearly, diabeticwife's diabetic husband has a lot more going on than diabetes. And she is bearing the brunt of it. I do not envy her the situation she is in, and I totally respect the fact that she blogs to vent, and document, and for her own personal reasons. I don't expect her to blog for my benefit, or the benefit of anyone but herself.

However, she really threw me for a loop when, in response to a commenter's thoughts, she said:

"I will pray that you never marry a diabetic. No one should "volunteer" for that."

And that, my friends, is where I ceased being merely an annoyed reader, and started to get pissed off. Hence the sarcasm of yesterday.

Aside from the fact that diabeticwife made that statement to a young, single woman with diabetes , I was concerned that such a strong and bold statement is now part of Google search results.

I have had visitors find my blog by searching on the phrase, "Should I marry a diabetic?" Now, if they are using Google to answer that question, they may have other issues, but my point is that everything we write about becomes part of a public 'knowledgebase'. And when we post incorrect information (eg, Jonah's way-off stats about the chances of a child of two diabetics having the condition), or when we post extreme generalized opinions, we are shouting it from the rooftop, metaphorically speaking.

Sarah and diabeticwife are absolutely entitled to their opinions. But I'm glad that people have reacted strongly with opposing thoughts, I'd like to add this to the public forum on the topic of marrying people with diabetes:

Being married to a person with diabetes can flat-out suck sometimes. Seeing a combative or belligerent spouse through a low blood sugar is a unique challenge, one that often leaves me angry and scared. Worrying about complications, fretting over health choices, and finding the balance between supporting and nagging - these may be a part of your life at times if you chose to marry a diabetic.

But I still say that yes, kind reader, I think it's ok to marry a person with diabetes. If you love them, and you want to spend the rest of your life with them, heck yes, take the plunge. Know that marriage is hard work, and if you want it to last and you want to be happy, you will have to work at it. Diabetes may or may not make it harder, but I dare say that the manner in which you and your loved one approach life with diabetes will absolutely impact your relationship.

This is my opinion, based on my experience, as a person with diabetes who also married a diabetic.

The Sarcastic Response

This is the first of a few responses to recent blog posts and comments offering dating/marriage advice. If my head clears on this one, I'll go for a thoughtful response. But for now, you get my own particular brand of sarcasm.

Kassie's list of people or types of people that you would do well to avoid dating, loving, and/or marrying.

1) People with diabetes.
2) People with food allergies that can result in anaphylaxis.
3) People with MS.
4) People who use wheelchairs.
5) People who eat fast food.
6) Cancer survivors.
7) Anyone who has a condition listed in the NORD database.
8) People who smoke.
9) People who drink.
10) People who eat red meat.
11) People who travel to other countries (they could pick up a disease you know).
12) Licensed drivers(much more likely to get into a fatal or debilitating car accident).
13) Airline Pilots, sky divers, mountain climbers, hot air balloonists and window-washers.
14) Anyone in any branch of the Military.
15) People with heart disease (I suggest a baseline EKG prior to any second date).
16) People with a family history of cancer.
17) Coal Miners (and probably their daughters).
18) People who live in Tornado Alley.
19) People who don't exercise.
20) Firefighters and police officers.

21) People who chew with their mouths open (ok, that one is for real. Who needs to put up with that til death do you part?)

Coach

My husband has coached Jake's baseball team the past few years. The pre-season coaches meeting - where rosters were handed out - was earlier tonight. John came home and immediately started calling players, introducing himself and sharing practice time and location information.

One call lasted just a few extra minutes, and I wish I had been listening in, to hear it first hand.

This year, a third grader who I'll call "J", was rather randomly placed on our team. Jake knows J from school, even though he's a year younger, because J uses a cozmo pump, too. John quickly let the dad know that both he and I have type 1, and that I use a pump, and that he's been a diabetic for over 38 years.

John said the relief in that dad's voice was palpable (ok, palpable is my word). He also said he would be sure to be more obvious about checking his blood sugar at practices and games, so that J would know it's cool. John's excited that there'll be a kid with diabetes on his team.

Faithful readers and friends will know that I met John while we were both working at diabetes camp. You gotta love a guy who has already proven himself to be good with kids. And you gotta love a guy who sees a kid with diabetes and gets excited about showing that kid that having diabetes doesn't have to get in the way of important things like baseball.

And for the first time in possibly forever, J's parents do not have to worry about teaching a coach the diabetes ropes. We've got it covered!

Meet Jenna Scarsi

It's my pleasure to introduce Jenna Scarsi, the 2006 winner of the Bayer Dream Fund. For those not familiar with the fund, Bayer Diabetes Care (makers of the Contour and Breeze meters) sponsors an annual contest that supports the efforts of an individual with type 1 or type 2 diabetes. Two winning dreams have featured physical efforts that demonstrate the unlimited potential of a person with diabetes (like John Dennis, who entered an around-the-world solo sailing race, and Peter Hoogenboom's amazing bicycle tour visiting all 48 states in the continental US). My project focused on sharing inspiration and information. My personal favorite dream fund activity, Colleen McCarthy LaPierre's "Dream Big" SCUBA and adventure camp, combined support, inspiration, community and a once off-limits activity (SCUBA diving)to create a truly inspiring experience for eight teenagers with diabetes.

Jenna, our 2006 winner, is a CDE and person with diabetes based in the Chicago area. For the past two years, she has hosted "Lights, Camera, Cure", a fundraising and education event that brings families together for a day of fun at the movies. A health fair prior to the event gives folks a chance to learn more about diabetes and meet other families living with it. It's a classic combination, with the added bonus of raising money for diabetes research.

Jenna's dream is to take the event nation-wide. With the help of the Dream Fund, she's hosting "Lights, Camera, Cure" in five cities across the nation. If she's coming to a town near you, I hope you'll consider attending the event.

Jenna's the kind of person with diabetes that has inspired me since my own diagnosis twenty years ago. She's that person who is willing to stand up and demonstrate that having diabetes doesn't mean retreating from the world and its challenges. She's the educator that teaches and shows how to live well, and who constantly looks for ways to improve the lives of her patients. Like so many of us, she yearns for a cure and works hard to support people with diabetes while we wait. And she's putting her life on hold for the next year to take that message to as many folks as possible. I'm thankful for her, and people like her, who focus their energies on what we can do, even with a cranky pancreas.

---

The Dream Fund is taking applications for the 2007 contest. If you have a dream that inspires others by demonstrating what people with diabetes can do, visit http://www.bayerdreamfund.com to apply.

Rome

Jake and I spent the last week in Rome. As in Italy. As in, 8+ hour transatlantic flight, different language, different currency, different everything. We toured the city with my wonderful parents and a group of adults, led by a former high school classics teacher. We saw many of the 'must-see' sights, and a lot of little out-of-the-way treasures.

We walked literally everywhere except to and from the airport. In ever-widening circles from our hotel (which was next to the Pantheon), we dodged tourists, scooters, and tiny cars along narrow twisting cobblestone streets. As Jake hopped around enthusiastically, the adults panted at the top of what felt like a hundred steps leading out of the ruins of the Forum Romani. I can't remember the last time I walked that much without raising money for something.

Hesitantly at first but with a confidence that increased as the week went on, we tried out Italian phrases like 'grazie' and 'buongiorno'. Our halting Italian was graciously tolerated by those we met.

Between two cameras, we took a combined total of 600 digital pictures of everything from ancient ruins to the tiniest cars we've ever seen.

We ate food so good that I've spent the last day or so looking at my pantry with disdain, yearning for fresh vegetables, prosciutto, mozzarella, and perfect portions of homemade pasta. We tried new dishes and came to prefer sparkling mineral water with our meals. The gelato deserves its own post, but you can rest assured that we sampled a variety of flavors, at least once a day. As we toured the city, we refilled our water bottles at numerous free-flowing fountains tied into ancient aquaducts.

My diabetes required very little additional attention, outside of more vigilant testing and preparation. I wore my Dex-com for the first few days, until the battery ran out. That was the only charger I forgot to pack. I pro-actively treated a few walk-induced 70's and 80's, and managed the pasta and other carbs well enough. No doubt, the constant and steady exercise was a boon. Perhaps I can get my doctor to prescribe daily walking tours of gorgeous cities as a therapy.

Perhaps most important, I shared this experience with my amazing ten-year old son, whose curiousity about Ancient Rome was the impetus for the trip. He was a delight to be with, and made me so proud with his questions, humor and enthusiasm, not to mention his all-around terrific behavior.

I now need to find a fantastically lucrative career that allows for extensive time off for travel. "Lottery Winner" is the only job title that comes to mind, so it may be a while before I return to explore more of Italy. But returning is definitely on my high priority list of things to do.

Words

I've spent a lot of time this week trying to find words. Words to describe how I feel about what happened at Virginia Tech. Words that might answer my son who, after watching his teacher break down and cry after her Hokie freshman son finally checked in on Monday, came home from school and quietly asked me, "why would someone do that?" Words to put the whole event in perspective.

I find myself coming up short.

When something horrible happens in life, it seems natural to talk about it. To speak it out loud, to label it and chew it over and talk it until it becomes less horrible. Less shocking. Sorting out the words has always meant moving on.

This week, though, as I ached for our neighbors here in Virginia, words failed me. Like the silent, shocked students that filled the auditorium on Tuesday, I've been eerily quiet. I cannot wrap my head - and consequently my words - around these events.

Because I cannot come up with the words, I fall back on what others have said. And the phrase that has haunted me of late is an old one, "We have nothing to fear but fear itself."

I believe that to be true, and never more so than now. Today, when we live at a constant state of heightened awareness - interspersed with lulls that are invariably shattered by tragedy somewhere near or far, we live in fear. Not a day goes by that I don't fear for my children, my loved ones, my friends. And for me, the problem with fear is that putting it into words only makes it more real.

Pause for a moment at noon today in support of the families who lost a loved one on Monday. Pause, also, for all those whose lives are purposefully taken each day.

Funnel Cake

It's spring break here in VA, so I took the boys to Williamsburg for a few days while their dad was away on business. A little fun, a little history, and two nights in a hotel with an indoor pool (which is Ryan's favorite thing to do).

We were a little harried on our way out the door, what with a last minute rush to find gameboys, but I managed to pack everything I needed for the trip. I have a travel case of pump supplies that I just throw in my suitcase, so I was all set, diabetes-wise.

Our first day was spent at Busch Gardens, with friends. The big joke with me and amusement parks is that I only go for the funnel cake. I hate rides. I'm afraid of heights, I get motion sick, and I'm not a fan of going fast. I did enjoy the tram ride from the parking lot to the front gate, though!

Busch Gardens has two funnel cake stands, one in "Germany" and one near the front gate. My plan was to walk the heck out of the park and reward myself with one tasty treat on our way out. A good plan.

Except I arrived at the park with enough insulin in my pump to cover lunch and basals for the day. I had a vial of insulin with me, but nothing to use to extricate it from the vial. My backup syringe and extra sets were in the hotel.

Even with all the walking, there wasn't enough insulin to spare. Had it been a pump emergency, I would have borrowed my friends' van and scooted back to the hotel to refill. But funnel cake doesn't qualify as an emergency.

And by the way, friends, funnel cake is not fried dough. Funnel cake is way better. Trust me.

The Burns Question

My brother was a volunteer firefighter in our hometown for many years. He once told me a story about a man who drove through three consecutive red lights, causing accidents at each light, yet continuing on. At the third light, his car finally came to a stop, and the largely-volunteer fire and rescue squad found themselves treating the injured at three simultanous accident scenes.

They were, understandably, absolutely livid with the driver. It was just after lunch on a pleasant Friday afternoon, and he was completely loopy. Uninjured and seemingly unaware of the havoc he'd just caused, the driver was assumed to be drunk.

Once they got close enough to the driver, someone spotted his medical ID, and they realized he was not a drunken asshole, but a man with diabetes who needed assistance. Until that moment, though, he was the person responsible for causing three accidents and injuring several other people. He was a man in control of a half ton vehicle, with the potential to take off and cause further harm.

I thought of this story as I read Doug Burns' tale earlier this week.

I thought about the fact that I hang out with people with diabetes - and have for over twenty years now - and I've only ever actually seen one truly combative insulin reaction. I've seen blank looks on faces, quiet people who are overly-giddy, and chatty people who are unusually quiet. But I've never felt threatened by someone having a low blood sugar. And that's not because I know diabetes and understand lows, that's because its a pretty rare experience.

I would guess that the security guard at a movie theater has seen hundreds of drunk and/or high people stroll into his theater. And I imagine that the police officers who responded to the theater's call for help were pre-disposed to think that the man trying to re-gain entrance to the theater was, in fact, strung out. Regardless of what he was wearing, or how 'normal' he looked. Their reality - the experience and training of police and security personnel - led them to respond in the manner that they did.

It's horrible that things panned out that way. If only Burns had known that the new diabetes drug (symlin, I'm guessing?) could possibly cause a more severe low, and packed extra glucose before leaving the house. If only the security guard had thought "this man needs help" before he thought "this guy's drunk". If only the officers had spotted the medical ID bracelet sooner. Perhaps then, things would have played out differently.

Was Burns a threat? Was it reasonable that, until the ID bracelet and wallet info was uncovered, the officers perceived him as a threat? He wasn't just lying on the ground, semi-conscious, he was trying to get back into the theater. The officers, who will see a thousand drunks for every one combative hypoglycemic person they encounter, had to make decisions, and quickly.

If I'd been there with my kids, and a muscular, combative, apparently intoxicated man was trying to gain access to the theater, would I have been afraid for us? Maybe. I'd like to think I would have given him the benefit of the doubt, but I'll never really know for sure.

If there is work to be done, I think it should focus on everything that happened after the moment the EMTs identified Burns as having diabetes. A mistake was made, one that could theoretically have been avoided. But there's nothing theoretical about the ignorance and foolishness that followed. Start with "Sorry", officers, and know enough about diabetes to realize that Burns' actions were beyond his control, and that he meant no harm.

Succo d'arrancia

I'm beginning to gather the things I'll need for my upcoming trip to Rome. Jake and I will be spending a little less than a week touring the city, along with my parents and a small group of adults. This trip was Jake's idea actually. He studied Ancient Rome, Greece, and China last year and wants to visit all three. Did I mention he's only nine??

I found key diabetes phrases in Italian, so I am prepared to ask for help, a doctor, and/or orange juice if needed. My favorite is "Devo mangiare qualcosa adesso a causa del mio diabete" which means "I must eat something now because of my diabetes". Here's hoping I don't have to use it!

I also found a wonderful list of Italian phrases that relate to food allergies. This will come in handy because Ho un'allergia impersensibilta a crostacei (I am allergic to shell fish). I've noted gambero, aragosta e granchio (shrimp, lobster, and crab) so that I can avoid them when ordering food.

I've requested letters detailing my need to carry syringes, lancets, pump supplies, insulin, dexcom insertion devices, and an epi-pen.

I even have a notorized letter from my husband affirming that I can travel outside of the country with our child.

The only glaring unchecked box on my to-do list is my passport. Yes folks, the US Government is messing with my head. We applied in January (at the beginning of the great rush for passports) and after a few weeks, I noticed that I could see the boys' passports in the online tracking system, but mine was not there. I called and navigated the ridiculous phone prompt system and learned that I was in the system, but with a mispelled last name (Gregono instead of Gregorio). "Karen" assured me the error was caught in time. "Karen" was wrong.

I received the erroneous passport in early March and spent... oh... several hours trying to figure out the conflicting correction advice online and on the printed form. Just to make things interesting, the passport people revamped their website in early March. So the path that I followed to get information one day was completely different the next. I kid you not.

Mailed off the passport, correction form, proof of name, and letter with travel dates on 3/17.

No sign of it yet.

And now... now the passport people won't even speak with you on the phone unless you have tickets for travel within 14 days.

So Monday morning, 7 AM, I'll start calling in hopes of figuring out where my passport is (though I know it was signed for) and what to do next.

The silver lining in all this is that my second set of passport photos (yes, I had to have them retaken. And pay for it) was way better than the first.

Once that is all sorted out, I think I'll be able to start getting excited! And I'll start working on carb counts for gelato...

Skating

When I was in middle school, the weekend activity of choice was Young's Regency Skating Center, out on rt 73 in Blue Bell. Dropped off by someone's mom, we'd spend the afternoon skating, crushing on the teenage staff, and crossing our fingers that the right someone would ask us to join them in a couples skate.

Skating wasn't exactly one of my strengths, but it was where the action was, so I did my best to learn. Eventually, I was solid enough on eight wheels to glide around at a respectable pace, and even though I couldn't spin in circles or skate backwards, I was at least not spending the entire afternoon glued to the railing.

I would find my rhythm and circle the rink, solidly making progress.

That is, until I smiled. When I would relax and smile I would invariably find myself falling. In a flash, I'd be splayed out on the wooden rink floor, red-faced and sore.

I find the same thing to be true of my diabetes care.

I don't consider myself to have ever had the excellent control that many of my diabetes peers write or speak about (even when pregnant, though the tools and standards were different back then). But for the most part, I work hard, I get around at my own pace, and I have success in managing my disease.

Sometimes the things that trip me up are beyond my control and I have to struggle to regain my balance, but I do so knowing that these are the unexpected bumps or collisions of life. It's easier to pick myself up and brush myself off when I'm laughing it off alongside another skater who has also fallen. It's easier to say, "well, yes, that knocked me for a loop, but what can you do?"

But othertimes, I just simply relax and before I know it, my diabetes feet are out from under me. Sometimes, my meter is out of sight, my strip prescription overdue, or even my insulin supply is running low. My exercise routine (such as it is) gets ignored for a day, then a week, then I can't even find my sneakers. And food? Well, I'm always one mis-step away from putting aside what little self-restraint I have in that regard. If my meter's not around to tell the blood sugar tale of the box of thin mints devoured, I can convince myself that it never happened.

On occasion, I find myself and my diabetes figuratively splayed out on the roller rink floor.

Sooner or later, I sit up and tighten my laces in a sheepish move to make it look like I meant to sit down just now. I kneel on one knee and place a skate back on the floor. I find my footing and slowly begin to roll again. Because flat-out on the rink floor is no way to spend an afternoon, and knocked down is no way to live with diabetes.

Tethered

Today, my thoughts on why I could never be an OmniPodder were confirmed.

Back when I first saw the Pod, at the '05 AADE Convention, I asked the rep working the counter how people would keep from losing the PDA part of it. And when I said 'people', I meant me.

The rep's answer was, "well, how do you keep from losing your cell phone?" Hmmm, after the first two times I lost my cell phone, I took to keeping it in my car. Not exactly a good solution for the device managing my insulin delivery. After I explained that I had lost my cell phone, more than once, he told me that they sold belt clips. That was a better answer.

I have no issues with pump tubing. As an aside, I see this as like people's opinion of the 'ic' word. Just as some can't understand why I'd rather not call myself diabetic, I honestly can't understand why tubing is a big enough issue to keep people away from pumping altogether. To each his own, though, right? I actually like the tubing because it keeps me from putting my pump down and walking away.

How do I know I'd be guilty of doing this with a key medical advice?

Because today, for the second time, I left the house without my Dexcom receiver. Luckily, I haven't actually lost it.

Yet.

edited to add: I should tell you that I have twice in my 11 years of pumping left the house without reattaching my pump. That should give you an idea of what I bring to this equation!

What Not to Say, Episode 1

Welcome to "What not to say", a brief but compelling new series depicting gaffes, clueless comments, and downright stupidity.

Scene: Casual gathering of friends and family, including two people with diabetes who use insulin pumps, as well as a woman who works for an insurance company.

PWD1: "Have you heard about the new Cozmo upgrades?"

PWD2: "No! What's coming? I'll be looking for a new pump next year!"

Swan Insurance Rep: "I can't listen to this, I get enough of it at work" (exit, living room left)

PWDs (in unison): "allllrighty then!"

Barton Girl Spotted!

Waiting for my flight home yesterday, taking advantage of the free WiFi in the terminal, I stumbled across this AP article about the new insulin pen from Lilly:

http://www.fredericksburg.com/News/apmethods/apstory?urlfeed=D8NF3AM80.xml

Cool news, yes, but I got a huge kick out of the fact that a Barton Girl is quoted.

Seriously, we are everywhere!

Who'll be my Larry Bird?

There is a new gym opening in our area, about 3 miles away from us. It's a Richmond-based operation called "American Family Fitness", and they're putting the finishing touches on it this week. We visited yesterday, during an open house, and decided to take the plunge and sign up the whole family.

I've never belonged to a gym before. I'm a little nervous about it, seeing as it's a decent enough financial commitment.

But here's what motivated me - it's a Family Gym. Truly. Like most gyms, they offer free care for kids. But starting at the toddler age, they offer games, activities, pool time, and sports. Beginning at age 9, the kids can go to "The Zone", where they have a kid-sized circuit (and staff who teach them how to use it), a fitness wall and classes like yoga, karate, cardio box, and more. All the classes are included in the fee. Kids 9 and up are also entitled to a free meeting with a personal trainer!

Add to that the fact that several of the families we hang out with also joined, and it seems like the best possible scenario for getting me to a gym.

Now all that's left is to settle on my own personal Larry Bird. Though I stand by my prior statements that Dr. J is the best player ever, six minutes doesn't seem like much of a workout! Being a Philly girl and long time Flyers fan (and very out of shape), I'll start with a Bobby Clarke 16 for now.

Barton Girls

I'm always looking for ways for us Barton Girls to give back to camp. Whether or not we benefitted directly from campership donations, all those who attended camp benefitted from donations of money, time, and energy (and those of us who worked there but never attended also benefitted from everyone's support).

Kerri at sixuntilme had graciously posted a sixdegrees.com fundraising badge for Barton. I think Kerri has a real shot at winning this contest (and it would be only fitting that one of the SIX winners of the SIX degrees of separation contest be Kerri from SIX until me!). If she does, Barton will receive all those donations PLUS $10,000 from Kevin Bacon's foundation.

Barton Girls who blog: please grab the badge code and place the badge on your blog (it's easy! just click the link). If you don't have a blog, please consider emailing Kerri's blog address to everyone you know, along with a few words about what camp meant (or means) to you.

A few years ago, I sent a simple hand written note to a dozen family members about my camp experiences. It raised over $800 for camp! If you tell people about it, they just might be inspired to donate!

PS: The photo on the badge? That's a picture of a bench at Barton, inscribed with the words of a song written by one of my Barton staff member years ago. I asked the songwriter about it once and she told me that I used that phrase to describe camp to her during her interview.

Thirty Days

Thirty days hath September
April, June, and November,
All the rest have 31
Except February
which messes up the rhyme for me
But really...
On what planet
does 100 strips cover a month's worth of testing??

Random Recovery Remarks

So far, so good. A rather uneventful recovery from a best-case-scenario of a bad situation. I mean, really, if one has to have appendicitis, this was the way to go. Less than 24 hours from ER to discharge, decent blood sugars (only one post-op spike of 286), uncomplicated surgery... really, I'm stretching for something to whine about!

I don't love the percocet so I'm going without today, in hopes of not needing much more than advil. So far, so good. I've been able to get some work done, though I'm starting to hear the tasks piling up. The big challenge is staying focused and, well, awake. Hopefully today's shower won't require a follow up nap.

Of course, what's better than a nice long shower followed by a nap? Maybe only a shower, nap, and a cup of hot cocoa with mini-marshmallows. Yum.

I wonder if there's anyone who'll deliver mini-marshmallows...

On a diabetes note (did you like that? marshmallows to diabetes? nice, huh?), I was scrolling through my pump history and noticed that during or immediately after surgery, someone gave me insulin. Now, I know that the pump is uber-user-friendly, but I give the hospital staff kudos for using the correction wizard to dial up a dose for my 186 blood sugar. In recognition of the stress of illness, they also upped the correction a smidge.

Looking back, one thing I would have done differently would have been to start a temporary basal rate of 110% sooner (or asked the hospital staff to up the basal instead of upping the correction bolus). That would have helped with that one post-op high. Other than that, it was really quite smooth.

Julie Cooper, Wanda Plenn, and April Nardini

Subtitle: TV is Educational

Diabetes is often portrayed poorly on television, with story lines that include factual flaws and overly dramatic... shall we say... exaggerations. I assume that the same is true for other conditions, but since I don't have the first hand knowledge to compare fact with fiction, I can't say for sure.

As frustrating as inaccurate info is, sometimes the basics get through, and that can be a good thing. A character's illness can plant a seed of information that comes in handy down the road. Assuming, of course, that it doesn't lead one down the path of mis-self-diagnosis! TV + Google = Hypochondria (sometimes!)

So what does this have to do with Julie, Wanda, and April? All three are characters who have had appendicitis. And since I'd never had it, nor did I know anyone who'd had it, I can only assume that my basic knowledge of the symptoms comes from what I've seen on TV. The one thing that has always stuck in my mind is lower right belly pain, and pain that is worse when you push gently and let go. And that tidbit goes all the way back to the 70's and One Day at a Time.

When I woke up with a nasty stomachache in the middle of the night, I thought it was your average run of the mill bug. Dreadful, but no big deal. When the pain moved and settled into the lower right side of my belly, I got suspicious. And I must say, what little I knew about appendicitis pushed me past the usual internal "am I sick enough to go to the Emergency Room" debate. So it was off to the ER yesterday afternoon at 1PM.

By 9 I was in surgery, having my appendix removed.

Because it was caught so early, and the surgery was so uneventful, I was able to come home mid-day today and am now enjoying the perks of percoset and the benefits of bedrest (specifically, I have sole control of the upstairs TV. And it's pageant night. 'Nuff said.)

So thank you Julie, Wanda, and April, for your dramatic portrayals of appendicitis over the decades. I appreciate the heads-up!

On the diabetes front, pretty much everyone in the hospital was great. Most were very receptive to hearing about what I needed to do. We used my meter and blood sugar results for the first 8 hours (and would have used it after surgery but my lancet was left behind in the ER). They kept my pump on during the surgery, which was great because I didn't have to worry about any gaps in basal insulin, and I was able to take insulin as soon as I needed it (without having to wait for them to bring it to me). Aside from the asshole anesthesiologist who had a few ridiculous comments about my 210 blood sugar and the correction dose I had taken (he thought it was insufficient), I was in charge and didn't feel like I had to work extra hard to stay healthy, diabetes-wise.

A Little Ha Ha

My sister-in-law has had diabetes for a while, and has been using an insulin pump for about two years. She's the mom of my adorable nephew Nolan and our one and only gorgeous neice Madeleine. On top of taking care of those creatures, and herself, she works a demanding full-time retail management job.

At her last endo visit, the doctor handed her "this great new book". Yup, you guessed it, she forked over a copy of "When You're a Parent with Diabetes"! This thrills me to no end, knowing that the free copies provided courtesy of the Dream Fund are finding their way from the Bayer reps, to health care providers, and ultimately to patients.

The funny part of the story (to me, at least) is that my sister-in-law's name is Catherine Gregorio and the endo didn't catch the similarity to the author's name (Kathryn Gregorio Palmer). I'll forgive her that cluelessness this time!

Glory Enough for All

A young woman I know from my camp days is trying to track down a copy of the movie, "Glory Enough for All". For those who don't know it, that's the story of Banting & Best & others and the discovery/development of insulin.

Her library system does not have a copy.

It's no longer in production.

Any ideas?

Dining Out

I've been focusing on carb counts lately, in an effort to re-establish some better diabetes habits (and to see some better numbers). The effect has been remarkable. Turns out, when I count carbs correctly, those numbers are much much prettier. Still not perfect, but since I'm not striving for perfection, it's rather fantastic.

Counting carbs is easiest when I reach for pre-packaged food items. Unfortunately, those aren't always the most nutritional, the most satisfying, or the most interesting. I've been going heavy on the veggies in an effort to get some variety and nutrition back into my diet. The effect of a misjudged bowl of greenbeans is not nearly as dramatic as a misjudged servin