They're BAAAACK

I only ordered 3 boxes from my favorite local girl scout, Kimber.

Her mom emailed me to say that Kimber noticed I was 'going light' this year.

Am I alone in thinking that one serving size of Thin mints is a sleeve?

I am Lucky

I have diabetes.

I have health insurance.

I have a roof over my head.

I have a decent job and a husband with a decent job.

I have plentiful food in my house, and money to buy more.

I understand that it's important that I go to the endocrinologist.

I can afford to go to the endocrinologist, and the eye doctor, and a nutritionist.

I have parents who kept me clothed and fed, happy and healthy for the first 21 years of my life (and even after that filled in some gaps for me).

I have parents who saw me, their teenage daughter, lose 30 pounds I did not need to lose and said, "something's not right here," and took me to the doctor.

I have people who ask me how things are going with my diabetes, even though I am not their responsibility, or their liability.

I am not an 11 year old girl with an A1c of 15 and parents too disconnected, unprepared, or otherwise unable to keep me healthy.

And I believe, in my heart of hearts, that I am not the kind of mom who could ever, ever, let something like this happen to a child of mine. May that always be the case.

Who Wants to be a PWD?

Inspired by Amy's recent round-up of diabetes quizzes, I'm here with a few headscratchers of my own. You may phone a friend or ask the audience if you need help with these.

For $100 or 120 Strips:

What is the appropriate action to take when you see 320 on your blood glucose meter?

a) Administer a correction bolus based on ratios determined with the assistance of your medical team.
b) Laugh maniacally and curse the diabetes gods.
c) Find nearest brick wall and bang your head against it.
d) Order Chinese food. What the heck, you are already high.

For $500 or a visit to the endo with annual bloodwork and a TSH panel thrown in for good measure:

When you succeed in lowering a high blood sugar to a number within range, you should:

a) Pat yourself on the back for a job well done.
b) Eat something! anything! You're back in range, celebrate by pushing it back up there!
c) Test your blood sugar 4-5 times so that your meter average isn't killed by the 4-5 times you checked while you were still high.
d) Pee. Remember, your body is still processing that high from 2 hours ago.

For $3000 or my 2006 out-of-pocket maximum:

Your head is pounding from a day of swinging blood sugars. You:

a) Ship the husband and the kids off to Chuck E Cheese and the movies.
b) Scour the cabinets for something stronger than bubblegum flavored Children's Advil.
c) Curl up on the sofa and watch mindless TV.
d) All of the above.

Not to complain, but can you tell what kind of day I've had?

Happy Anniversary Allison

Driving home to and from the store tonight, I was too crabby even for my usual XM Comedy fix, and decided to play the Tom Paxton CD that was sitting in the player.

Track #13 came on, and the considerable stress of the day... the week... the whole entire month... melted away with the gorgeous sound of children's voices in harmony, with Tom singing soft and strong.

Peace,
peace will,
peace will come,
and let it begin with me.

We,
we need,
we need peace,
and let it begin with me.

Oh, my own life
is all I can hope to control.
Oh, let my life,
be lived for the good,
good of my soul.

Let it bring peace,
sweet peace,
peace will come,
and let it begin with me.

I thought of my own battles. I thought of the silly things that stress me out. I thought of the example I must set for my boys. I thought of big things like war and little things like the argument John and I had over homework tonight.

And I though of Allison, who fights the good fight against diabetes, in search of peace, for herself and for others.

I played that song 6 times between the grocery store and our driveway. I sat an extra minute, letting the notes fade peacefully into the cold dark night air, before returning to the glorious chaos that is Home.

dTunes

I was diagnosed with diabetes in June of 1986. The end of my senior year in High School. On the cusp of... well, everything. My school had a program called L.E.E.P., which allowed seniors to take exams 6 weeks early, and finish up their year volunteering for a local business. I secured a docent slot at The Franklin Institute in Philadelphia. I took the train downtown each morning, in sneakers and 'business clothes', wearing a walkman and pretending to be grown up. I considered my LEEP project to be the second coolest one that year: the first being my friend Cathy's gig, at the Philadelphia Zoo. She edged me out because she got to commute with, and work near, Brian Cuff. Sigh...

I listened to top 40 radio (I was a teenager, after all) for the hour commute into the city and the hour commute back home. As you probably know, the playlist for those times of day on a top 40 radio station usually consists of the same 4 or 5 songs, over and over. I knew that, at some point during the ride, my current favorite song would come on.

In June of '86, that song was Howard Jones' "No One is To Blame". For those of you not intimately familiar with pop music, mid-80's style, here's a snippet:

"You can look at the menu
but you just can't eat,
You can feel the cushions but you can't have a seat.
You can dip your foot in the pool, but you can't have a swim,
You can feel the punishment but you can't commit the sin.."

This, of course, was the time in my life when I was developing diabetes. The pounds were melting off, and I knew the location of every bathroom and water fountain in the entire Franklin Institute. The coldest fountain, by the way, is up by the library (staff only, sorry!) I missed the last few days, as I was spending quality time in the doctors office. I still haven't technically finished high school, as I believe I owe them some sort of report about my LEEP experience. Luckily, school was pretty understanding.

So, corny as it may seem, I have always considered that song to be my 'diagnosis song'. Some of the lyrics were highly appropriate (the bit about the menu, punishment without sin, and a line about a doctor and a cure). Hearing it brings me back to riding the train from Chestnut Hill, nodding off out of sheer exhaustion and probably due to ever climbing blood sugars. Counting the minutes until I reached Suburban Station, where I could stop and buy a soda to quench my thirst before walking down to work.

I know others who have a 'diagnosis song', or a memory that brings them right back to diagnosis time. What's yours?

I never watch C-span...

But, while channel-surfing the other day, I stumbled upon a "Washington Journal" segment with Mark Santora and NR Kleinfeld, New York Times reporters responsible for parts of the recent series on diabetes.

I tracked it down online (c-span.org, video archives under domestic/social) and gave the full segment a listen. Much of what was covered echoed points of the articles, but the emphasis (given the name of the show) was more on public policy.

A few things caught my ear.

First, one of the early callers asked if anyone had looked at the water in NYC, or at the drugs out there that are probably causing diabetes. This caused me to roll my eyes. The guests answered diplomatically, noting that the biggest known 'environmental' factor is lifestyle. After kicking it around a little, the caller's comments made me realize just how much ignorance is out there about diabetes. Ok, theoretically, there may be some insidious cause floating around in our water, but until we zero in on that, why not focus on the documented concerns?

Another caller talked about the nutritional value of food today vs what it was 25 years ago. To be honest, I'm not sure what her point was as I was distracted by an up-way-too-late child, but this call prompted an interesting (and diplomatic) response from Mark Santora, who culled from the caller's ramblings some thoughts about confusion around our food supply, misinformation about how food gets to your plate, and just how separated people have become from something so basic. It was an interesting point, I thought, and a nice save on the part of Santora.

What struck me most was Kleinfeld's response to the question, "How did the series come about?" Apparently, the impetus was last year's NY Health Department report on leading causes of death, where diabetes cracked the top five (coming in at number four). This caught their attention. Kleinfeld commented that most people don't think of diabetes as being a major killer. The feeling that diabetes is not a big deal disease and the 'so what, take some pills' response are pervasive. It is seen as a benign condition, when it's not. And, he noted, it was concerning that diabetes is becoming so prevalent without much public policy addressing its rise.

This comment did a lot to re-cast my view of the series. I, of course, don't think that diabetes (type 1 OR type 2) is benign at all. Which is probably why my reaction to the series focused on the harsh picture being painted, the failure to provide hope or suggest solutions, and the scare tactic approach being used. I forgot that not everyone knows - or pays attention - to the toll diabetes can take on people. I forgot that news blurbs about diabetes that catch my eye or ear go completely unnoticed by most of the population. So, perhaps, a huge slap in the face is what is needed.

I'm still incredibly suspicious about the whole Registry angle. It strikes me as odd that the series never mentioned this new approach by the NYBOH (careful readers have my permission to laugh, as I did go out on a limb after day three of the series and predict that day four would, in fact, focus on the Registry). And I still don't get how a letter from said BOH will make a difference to people who, according to the picture painted by this series, are already way ahead of the curve (in that they are actually being seen by doctors who order A1c's, and they actually go have them done, and they can actually afford them.)

I'm also concerned about the potentially staggering burden that the emphasis on lifestyle places on the patient with few resources available to make an effective change in their lifestyle. Are these folks a 'lost generation'? When complications hit, will we sit on our high horses and say, "You should have known better?" I hope not, because (bleeding heart liberal that I am) I think the 'village' shares some of the blame here.

But I'm on board with the fact that the village needs to pay attention to diabetes. Now.

What's your A1c?

I know a lot of people with diabetes. It's unavoidable, having worked at Barton for about 7 years and having married a man who'd been involved with Camp Joslin since 1970. Add to those friends all of the on-line folks I've met, and the folks I've talked to over the past year as part of my book project, and we're talking a whole lot of peeps.

So periodically, I'm involved in a conversation about A1c's. Sometimes a number is casually dropped, sometimes people flat out ask what your latest 'score' is. Personally, I don't ask this question and I almost never divulge my actual number. Rather, I talk about how satisfied I am - or am not - with the latest value. This comes from having an A1c of 10 and feeling even worse when talking to someone who's hanging out in the 6's. But it also comes from being under 7 and talking to a friend in the 10's, and seeing their discomfort.

Recently, a pal of mine mentioned that her A1c was 7.6. I thought that was terrific. Turns out, she was devastated - highest she'd been in a while (or maybe ever). Oops, my bad. Different day, different friend: 7.8. "That's ok," I said. Oops, she'd finally dropped under 8 for the first time in about 4 years and, until I opened my mouth, was ecstatic.

Yes, there are hard and fast numbers that we need to shoot for. ADA says under 7, AACE says under 6.5, lab values may vary. Sure, there are some benchmarks. But I think for most of us, how we feel about that number is pretty important.

So I'd like to propose a new system for discussing our A1c's outside of the medical profession. It's based on the hospital pain scales, and illustrated using those annoying IM emoticons. Add the numbers as you see fit.



My last A1c? Definately frowning. But I'm hoping for at least a wink by March, then maybe a full-on grin this summer.

SAT scores and GPA available upon request

Speaking of Miss America

Congratulations to Nicole Johnson Baker and family on the addition of Ava, born 1/7/2006.

I read the transcript/listened to the post show podcast of the dLife episode where Nicole announced her pregnancy. I was struck by the fact that, when she was initially diagnosed, she believed that diabetes meant pregnancy was not an option (based on what people were telling her).

When I was diagnosed, one of the first things I did was tell the woman whose kids I babysat (I was 18). The first thing she said was, "oh, a friend of mine has diabetes and just had healthy twins." What a powerful and positive thing to say to a young woman who has just been handed a nasty diagnosis! Much nicer than, "oh, my aunt had a touch of the sugar and just had her toes amputated."

Ah, the power of words.

Start Spreading the Bad News

(note: sorry, I seem to be unable to discuss NY without invoking that song.)

I've been reading the NYT series along with most of you. Day 1, I was furious. I felt the article was trotting out the worst case scenarios as a scare tactic, emphasizing patient failures, and glossing over the societal and financial barriers to good diabetes management. I engaged in a lively debate with my favorite on-line diabetes group, focusing on the blame game and patient responsibility. The debate invoked both the "Wah Wah" argument and the word 'troll' (note 2: what an awesome group of women who can passionately debate something so close to our hearts without getting ugly. Troll comment, which was mine, not withstanding.) I felt - as did a few others - that this was classic 'shock and awe' propoganda intended to soften us up to drop our objections to the NY Diabetes Registry (yes, that sounds silly when I write it down, but I'm a very cynical person.)

Then, I found out it was a series (oops). Day 2 gave us what many were hoping for: a glimpse into the world of the patients mentioned in Day 1. More information on those societal and financial pressures. A discussion of just how hard it is to change habits late in life and how hard it is to embrace the concept that you *must* take care of yourself *now* to avoid complications later in life (even when those complications are everywhere in your family and neighborhood.) Discussion of the disconnect that accompanies such an insidious disease - if you don't feel ill, how do you motivate yourself to treat your illness?

Today, Day 3, terrifies and infuriates me. I'm trying to turn that into motivation - sort of a 'well clearly the insurance companies will fail me until I need a toe lopped off, so it's going to be up to me.' I'm trying to figure out what job I can get to make enough money to never have to worry about insurance coverage. "Megamillions winner" comes to mind. I am shocked that most people only receive coverage for one strip a day. That's just flat out ridiculous.

As far as my thoughts, opinions, and reactions to this series, I'm just scratching the surface here. The last three days have been a whirlwind. I am anxiously awaiting Day 4. My cynical self is betting it will be an argument in favor of the Registry, perhaps portrayed as the only hope in this sea of diabetes despair. I still have huge issues with what I've heard about the Registry. The opt out seems ill-defined and I can see no value in sending a critical letter and some educational materials to people who are 'failing to meet diabetes treatment guidelines'. I'm willing to wait for more information before deciding.

But I just might be full up on diabetes information this week.

Symlin, the Exposer

At my last appointment, my endo offered up Symlin as a potential tool to battle my post prandial highs. Seemed reasonable to me, and I jumped on board.

Got the vial home, tried it once, and spent the next 3 or 4 days nauseous. Not from the Symlin, but from a regular old stomach bug. Came out of that and started up again - only to find a serious flaw in my diabetes life.

I've always known my carb counting was a little... weak. Numbers flummox me. But what Symlin exposed about my routine is that I don't have one.

I'm all over the place. I snack. I graze. I nibble while I prepare meals for my kids, then eat a light supper only to be hungry before bed. I'm not sure I have a true '2 hour post-prandial' blood sugar... because I'm rarely 2 hours away from my last tidbit.

Symlin is only taken when you are sitting down to a meal of 30g of CHO or more. So I've been finding myself not taking it.

When I was diagnosed in 1986, diabetes was still about meal - snack - meal - snack - meal - snack and exchanges. Two 'breads, one 'fruit', a 'milk', and a few 'meats'. Flexibility? Not much.

Over the last 2o years, and especially after starting on an insulin pump in fall of '96, my diabetes has become much more about eating when I am hungry and not denying any carb I can successfully count. What has evolved over the past few years is a very flexible lifestyle. And that's not Symlin-friendly.

Actually, it's not all that diabetes-friendly. Yes, I believe that strict schedules and complete denial of treats only sets people (well, me) up for failure. But I'm starting to realize the value in a tighter routine and a more limited selection of foods. I am reminded of the advice Dr. Stu Brink gave a camp pal of mine years ago: eat the same thing every day until you get it down. Monotonous? Yes. Effective? Very.

Symlin may have served its function without even being injected. My goal this week is to skip the snacks and focus on the meals, to get some real post-prandial data. Then, I think, Symlin could be truly useful.

Hangin' out with the Cool Kids

I find myself in terrific company.

Thanks to all who voted for my blog - checks are in the mail ;)

Livin' la vida diabético

An Open Letter to CEO's, Physicians, and others who want to "understand diabetics":

I applaud you for attempting to understand what your patients or consumers with diabetes experience on a daily basis. Truly, I think it's great that you are thinking of us. But as you undertake this quest to empathize, consider the following:

- Until you actually have a chronic, potentially debilitating disease, you won't understand. Really. You are welcome to try to get a glimpse into the mechanics of diabetes, but don't expect to truly experience it. We know that you can't truly experience it, and we won't hold that against you.

- Don't even think about complaining about a once-daily blood sugar check, or a few days spent living the 'diabetic life'. That's just annoying. That's like complaining to a marathoner about the short sprint to the open cashier at the supermarket. Here's a less annoying quote: "After checking my blood sugar a mere ___ times, I have newfound respect for people with diabetes who do this day in and day out."

- Take 10% of your family's income and toss it out the window. While you're at it, give up your life insurance or, if you have access to a group life insurance plan, lower your insurance to the maximum amount allowed without a medical exam.

- Consider this: have you ever found yourself on a deserted stretch of highway - the creepy kind, where you don't want to get out of your car for anything - and you really, really, really had to pee? Or how about the time you sat down in a window seat and the two very large passengers between you and the aisle (and the bathroom) fell fast asleep at the start of a 3 hour flight? Imagine feeling like *that* every time your blood sugar skyrockets.

- Find a really annoying person, go out to lunch with them, and have them say, "can you eat that??" everytime you take a bite.

- Try this, in order to get a little closer to the diabetes experience. Check your blood sugar, but disregard the nice in range number that appears on the monitor. Instead, open up an envelope that has a random number written inside: 278, 45, 180. If the number is high, interrupt what you are doing to visit the bathroom twice in the next hour. If the number is low, play the party game "Dizzy Bat" and then try to open and drink a container of orange juice. Doesn't matter if you are on the phone with investors, or in the middle of a meeting. You have to take time out to deal with it.

And then, at the end of each day, you will be graded on those numbers, and on how well you stuck to the routine, and on whether or not you made 'smart' food choices. If you get an 'A', great. A 'B' means you have to donate a day's pay to a diabetes charity. A 'C' means you donate 2 days pay and lose your Blackberry priveleges for a day. You get my drift - it's hard to approximate the guilt and anxiety.

It won't be exactly like living with diabetes, but it sure would be fun to watch.

Sincerely,
Kassie Gregorio Palmer
PWD since '86

July '03

I'm standing outside the airport at 1 am on a rainy night. Thunderstorms wreaked havoc with flight schedules, and our arrival was delayed 7 hours. We booked a room at a nearby hotel, rather then drive the 2+ hours back to our house. We're close to being safe and sound and fast asleep after a long, long day.

The airport is in the midst of a huge construction project and traffic is a nightmare. We're trying to catch a shuttle that the hotel swears is on its way. It's noisy and hot and the poor kids are exhausted, asleep on their feet. I see the shuttle drive by, three lanes of traffic between us, and it just keeps going even though we're standing where they told us to stand. We decide to give up and take a cab.

I stand in the median with the kids and watch as my husband crosses back over to the airport entrance to try to figure out where we need to be to catch a cab. I watch him talk to an airport worker, getting more and more animated, finally throwing his hands up in the air. He returns to us with no information.

He's a level headed guy, and he's not making any sense right now. He's pissed at the person he just spoke with, but for no reason that I can discern. Something's not right. So I tell him to test his blood sugar.

The kids just want to know when we're getting out of there. I ask them to be patient, as ridiculous as that seems.

He clocks in at 27. My concern turns to full-fledged panic. We have nothing on us - all supplies were consumed during the delay.

I tell him to sit tight. I'm afraid to leave the kids with him in this chaos, so I push one in the stroller and drag the other along with me. I re-enter the baggage area and locate the vending machines. Parked on the floor in front of the machines, I realize I have no change, only a $20 bill. In tears, I beg strangers passing by for change. They give it to me, and I buy a bottle of juice and run back to where we left my husband.

Remarkably, he is conscious and relatively coherent. He drinks the juice, we get a cab, and check in to our hotel.

Everyone is asleep in no time. Except me. Me, I hide in the bathroom and cry.