Dusting off to Vote for Ryan

Hello there! Remember me? Yes? Thanks! No? Um, that's ok, we may have never met... according to blogspot I haven't posted here since last September!

Well, here I am, to ask the DOC to do me a favor. Even though it makes me feel like a bit of a fair-weather-blogger-friend. I entered a photo of my younger son playing soccer in a Facebook contest, and I wrote about how he doesn't let diabetes get in his way while playing travel soccer. I'd like to ask for your vote, if you have a minute (and a facebook account!)

Here is the link: http://tinyurl.com/VoteforRyanP

If you go to the link, you'll notice that I wrote about Ryan's diabetes. When I heard about the contest, and thought about what I would write, I was torn between focusing on the fact that Ryan is really, really wonderful at leading his team (even as they've suffered some big losses in a new, tougher league this season) and writing about diabetes.

Each time I attempted the 100 words, though, I could not NOT write about diabetes. You know how it is - it's there, sometimes a giant elephant in the house, sometimes just an annoying mouse. That's true on the soccer field. Sometimes it plays no part, but other times it's huge, like when the coach waves us over from the other side of the field because a half-time blood sugar check turns up a number that must be dealt with immediately, or when I cross my fingers that the high-blood-sugar correction I gave him kicks in just enough to make it safe to play. Maybe it's my 26 years of diabetes advocacy, maybe it's the feeling that many parents-of-kids-with-diabetes have (that "dammit, the kid stabs himself 10 times a day, he should get something positive out of this thing! feeling)... who knows. His challenges are certainly not the biggest ones ever faced by a young athlete but we're proud of the way he's pursued his intense love of sports despite having to manage all the diabetes stuff.

Thanks in advance for voting, and please feel free to share the link on your Facebook wall. And twitter, if there's anyone out there who understands that newfangled tweeting thing!

Very cool!

Passing this along from Jane K. Dickinson... I was very excited to hear about this program last spring. Kudos to Columbia for making it happen!!

From Jane's blog:

Something big happened today. The Master of Science in Diabetes Education and Management program at Teachers College Columbia University started! This is the first program of its kind in the country (if not the world).

It all started in 2005, when two nurses discussed the idea of starting a program that would provide a more professional path to the certified diabetes educator. Six years later, many proposals written and approved, curriculum developed, hoops jumped through, and here we are. Nine nurses and two registered dietitians (one is also a nurse) are starting their journey to an advanced degree in Diabetes Education and Management. This group of students is dedicated to improving the lives of those who live with diabetes and enhancing the role of the diabetes educator, by shaping the future of diabetes education.

The Diabetes Education and Management Program is a 36-credit Master of Science, and it is offered entirely online. Our first group of students represent nine different states, and may only step foot on the campus of Columbia University for graduation!

This is an exciting day in the diabetes education world. Please spread the word!

My Six

I think today is D-blog day. I say "I think" because, without looking at my calendar, I'm not even sure what day it is today. A recent four-day weekend, the time change, and the 5 different sporting events my sons participated in over a 24 hour period this past weekend have me all muddled up! In fact, today, a cashier told me to have a nice weekend, and I didn't even flinch. Sadly, it's only Tuesday.

Apparently, the theme this year is "Six things you want people to know about diabetes". I'm grateful for a theme, since writing has not been easy lately. So, here goes...

1) My diabetes is different than your diabetes. You'd be shocked at the things I could tell you about my diabetes management over the years. Or, maybe, you'd be inspired by my experience. Most likely, both. Think of my diabetes as kind of a shock-and-awe thing!

2) My sons' diabetes is different than your kid's diabetes. Yes, the way we calculate boluses is the correct way to calculate boluses (for us). Yes, I'm happy if they are under 180 and ecstatic if they spend even a few hours hovering in range. It's rare. It's our goal, but we spend more time chasing our goal then enjoying any blood sugar related accomplishments.

3) Your (working) pancreas is way smarter than my brain. Your pancreas is a freakin' genius. How the hell does it keep your blood sugar so perfectly in range? How does it know that today is a sunny day, so recess will be outside? Or that today's the day that you have a really stressful conversation on the agenda? How does your pancreas titrate so damn well? Because, seriously, I know exactly how Ryan's day will go tomorrow, at least from 8:20 to 3:45, and I know exactly how many carbs he'll have for breakfast and lunch, but I'll more than likely guess at whether to round up to 3 units or down to 2.5. It's a bit of a crapshoot.

4) The tools are good. But really, they're nowhere near as good as your pancreas. Yes, we can check blood sugars in 5 seconds, and we can treat a low blood sugar with a precise amount of fast-acting carbs, but that doesn't change the fact that Jake spent 20 minutes in the nurse's office today, feeling like crap while he waited for those 15 grams of CHO to kick in.

5) Yes, I can eat that. Often, I probably shouldn't. But neither should you.

6) Yes, I want a cure. Yes, I realize there are worse diseases out there. Yes, we can handle blood sugar checks and insulin injections and lows and highs. We can live with diabetes. We can manage it. But every day without a cure is another day that damage is done to the tiny blood vessels of our eyes and kidneys. Every day without a cure is another day that we worry about how we'll pay for all our medical supplies. Every day without a cure is another day that we risk having an incapacitating low blood sugar, or a sickening high.

And nighttime, for me, brings fear for my boys that I can't write about, can't talk about, even with those who share that fear.

I need a good night's sleep.

We need a cure.

Back to School

The boys returned to school this morning - Jake to 8th grade and Ryan to 3rd. The last week has been a flurry of school shopping, back-pack-finding, and re-acclimating to a decent bedtime. And of course, school / diabetes management prep.

We hit Target for pencils and paper, then headed over to the food aisles for individually packaged cookies and crackers, along with snack-size skittles and juice boxes. Then it was off to the pharmacy for 2 new bottles of ketone strips and prescription refills to ensure that we had enough supplies to stock both nurses offices and all the classroom areas. When we got home, the boys sorted their school goodies while I sorted diabetes stuff (gotta make sure I don't send the Arthur-themed juice boxes to the 8th grader's nurse). I updated their classroom info sheets and Ryan's bus plan, made sure Ryan's current medical management plan from the doc was dropped off, and discussed Jake's plan with his nurse (signed paperwork to follow! I promise!).

Both schools hold an Open House prior to the first day, where you get your schedule, meet your teacher(s), drop off supplies, join your PTO, etc. For us, it also included a trip to the nurses offices to deliver supplies. And in Jake's case, it also included handing each teacher an info sheet and a ziplock bag with 'lockdown supplies'. They had a lockdown last year, and were not allowed to leave their classrooms. Jake felt low, but had fallen into a routine of going to the nurses office for testing and treating, and had left his kit in his locker. So, now I equip each room with cookies and skittles, to be kept in the teacher's desk as backup.

Jake tolerated my quick speech to each teacher and my corny jokes about giving them snacks that they can't eat. Having his (now shorter-than-him) mom talk about his diabetes in the midst of an open house can't be thrilling. But it's the best way to be sure they get the info they need.

Ryan's teacher seemed comfortable with the diabetes info I gave her, which is good because 2 of the 3rd graders with diabetes ended up in her classroom.

For both, my newfound unemployment (I resigned my job in June) means that I will be even more available to communicate with staff and (especially in Ryan's case) I will be a much more active volunteer at school. Hopefully, we are set up for a good year.

This morning I completed the final prep steps by ensuring Jake had enough insulin in his pump to get through the day and handing Ryan's bus driver his emergency glucose supplies.

T's crossed, I's dotted, good to go.

But, in true real-life form, the phone rang at lunchtime because Jake forgot to reconnect his pump after we changed the cartridge. Luckily, after nearly 6 hours without insulin (and a decent sized breakfast) he was only 252 (what is up with that??).

Oh well, perhaps tomorrow we'll get it right!

24

24 years, that is, since my beta cells lost their battle with my immune system. I'll be honest with you, I'm tired of it. There, I said it. But I know you understand.

Here's a little dia-versary trivia for you:

The lab bill from the day I was diagnosed with diabetes (6/16/1986): $77.00

The lab bill from the day Jake was diagnosed with diabetes (12/17/2008): $741.00

At least Jake (and Ryan's) doctors had the good sense NOT to suggest that there'll be a cure in 5 years. That's what they told me in '86 and that's what they told my mother-in-law in '68. You got the 5 year estimate, too, didn't you?

What Kind of Mom?

The hardest part of Ryan's diagnosis (so far) has been making an impossible decision around whether or not to participate in a study.

When Jake was diagnosed, he was too young for any of the studies looking at protecting the remaining beta cells, so we didn't have to consider any research with him.

But Ryan was diagnosed a month before his 8th birthday, which made him eligible for the phase III Protege Encore study as soon as he turned 8. This study is evaluating the use of Teplizumab, a monoclonal antibody. Monoclonal antibodies have been used to treat Crohn's Disease and Rheumatoid Arthritis, and the premise is that they help preserve beta cells for years after diagnosis.

And having some beta cells, as anyone who's been through or witnessed a honeymoon period knows, is a good thing. According to the study doc, 75% of the people who are on the drug are maintaining A1c's under 6.5% two years after starting (don't quote me on that, I heard a lot of info that day.)

That, I think, is a very good thing, as is the overall 'greater good' aspect of research. I owe my life to those brave souls who were willing to inject mashed up pig pancreas extract. I'd like to be able to contribute in some way to the general knowledge and treatment of diabetes.

So, on the one hand, I thought, "what kind of Mom wouldn't jump at the chance to enroll her child in this study?"

But the 'cons' list is pretty overwhelming. The study requires 2 rounds of 14 days of 1 hour IV infusion. For a child, that means a picc line, which is put in under sedation. It also means bloodwork before and after each 14 day stint. And that 1 hour IV infusion ends up being the better part of a whole day in the hospital, while waiting for bloodwork to come back before and after the infusion. Side effects include flu-like symptoms. Risks include (though very, very rare) tuberculosis. If we did it while in school, it would mean 2 weeks missed. If we waited until after school ended, he'd miss 2 weeks of swimming and baseball and soccer camp (and that would also mean that round #2, which is done 6 months after round #1, would coincide with Christmas.)

And, as is true with all studies, it's a double blind study. Three groups of participants receive the drug in varying amounts, but the fourth group gets a placebo.

And that made me think, "what kind of mom would put an 8-year-old through all that?"

The more I thought about it, the more I stressed. My husband was not inclined to pursue the study. Ryan wanted nothing to do with blood draws from the arm. I tried to get feedback from the many people in the business that we know. I searched the Children with Diabetes website for other study participants (and only found one young teen in Colorado). I talked at length with the doctor and the study coordinator. I wanted someone to tell me, "You're flat-out crazy NOT to do this" or "you'd be insane to enroll him."

To be honest, and without sounding too dramatic, it was breaking my heart.

And then I had a conversation with Jake that settled everything.

He asked me, straight-out, "are you going to ask Ryan if he wants to do it?". Well, yes, of course... but Ryan's 8. How can he understand the benefits? So I asked Jake if he would participate, if he could. I explained what was involved, and what the benefit would be if he got the drug and not a placebo.

"So I could be in the study and not even get the drug?" Yes.

"Would I still have to take insulin?" Yes.

"Would I still have to check my blood sugar?" Yes.

"Would it be a cure?" Well, no.

"Then, no, I wouldn't want to do it."

And so it turns out that I am the kind of mom who would not put her generally healthy 8-year-old through 28 days of IV therapy and multiple blood draws on the chance that this drug will keep some of his beta cells alive a little longer. Even though, when Jake was diagnosed, I prayed that if Ryan was going to get it, he'd be a little older and have a few more days of functioning islets. Given the chance to extend the life of those islets, I chose not to enroll him.

Parents of kids with diabetes often wish that they could take on their child's diabetes. I wish I could take on this study for my kids and for all the kids being diagnosed. But 24 years into life with a broken pancreas, I'm obviously not eligible.

I'm sad about my decision, because I don't know what we're giving up by not participating. But I also recognize that there's no perfect choice to be made in this situation, and we've made ours, and I'm (mostly) at peace with our choice.

One Day, times four

I don't have much time for thoughtful writing or eloquence these days, but here's a quick run-down of last Tuesday here at Casa Palmer (aka The House of D).

6:30 AM: Jake gets up and gets ready for school. I prompt him to check his blood sugar, help him determine breakfast carbs, remind him to pack his meter along with his school bag, and ask if the nurse needs any supplies. Off to school he goes.

7:30 AM: check my own blood sugar and contemplate breakfast carbs.

8:00 AM: Drag Ryan out of bed, check his blood sugar, make his breakfast and give him his humalog. Sounds easier than it is, as we have a hard time getting a decent drop of blood in the morning, and he's not always hungry enough to warrant a full unit of insulin. Today I choose one waffle and the no-insulin route, which he loves, but which sets him up for a mid-morning high.

8:15 AM: Determine if it's a 'packing' or 'buying' day. On packing days, I make lunch that gets as close to 75 grams CHO as possible and write down the carbs on a zip lock bag. On buying days, I go online to see menu choices, switch to the school nutrition website to search out carb values, try to determine carbs of unlisted items, and write a note for the school nurse.

10:15 AM: First nurse call, from the elementary school. Ryan feels 'weird' (he's had a low already, and it scared him, so every odd feeling prompts him to test). It was a no-insulin morning, but he's 127. Discuss snack with nurse, decide against it.

10:45 AM: Second nurse call, from the middle school. The science teacher gave out candy bars in class, Jake bolused for the carbs, but then went to PE and is now 65. Confirm nurse's decision to give 2 juices and tell her not to send him back to PE until his blood sugar is above 100.

11:35 AM: Third nurse call, from the elementary school. Pre-lunch blood sugar is 72. Ryan feels ok, so we decide to have him eat his yogurt and not count those carbs, and then go to lunch. I tell the nurse to tell him that he can choose chocolate milk (38g) if he wants.

12:20 PM: Fourth nurse call, from the elementary school. Ryan ate his whole lunch, plus the chocolate milk, but it's a PE day - do I want him to have the full 1.5 units prescribed? I decide to go with 1 unit, because he's been telling me that he runs extra laps at PE because he likes to run.

1:15 PM: Phone rings, it's a telemarketer. I'm actually glad, because it's not a school nurse.

2:00 PM: I settle in for a one-hour pump training (yes, after wearing a pump for 14 years, and managing Jake's Ping for 6 months, and wearing my new Ping for 4 weeks, I still have to fulfill the training requirement.)

2:20 PM: Fifth nurse call, from the elementary school. Ryan's post-PE blood sugar is 247. Do I want him to have afternoon snack? I say yes, go with the smartfood (only 10g).

2:40 PM: Sixth nurse call, from the middle school. Jake is 445 for no apparent reason. I tell him to check his site, correct with his pen, and let his coach know he can't practice after school today. He feels ok, so I ask him to try to catch the bus (otherwise he'll have to wait in the office until I can get there.)

2:45 PM: Seventh nurse call, from the middle school. Jake made the bus.

3:00 PM: I wrap up my pump training by asking the CDE if there is anyone in our area that does counseling that knows chronic illness. Much to my delight, she fires off a name. Then, a minute later, says, "for the kids, right?" I reply, with a slightly crazed look in my eyes, "No, for me!!!" She offers to investigate.

3:25 PM: I swing by Ryan's school with a teacher appreciation gift, and check in with the nurse while I'm there. We discuss my philosophy that, unless he's super-high (in which case she'd be on the phone with me anyway), he should always have a snack with his classmates.

3:40 PM: Home, I check in with Jake, who is even higher. Determine that he a) used his pump to correct, b) forgot to reconnect his pump after PE and, c) never really checked his site for leaks (because then he would have noticed it wasn't connected.) Try to impress upon him how important all of these things are. Suspect that he's not quite listening, until I mention that high blood sugar = missed soccer practice = possible reduced playing time. Whatever it takes. In the back of my mind the whole time is the knowledge that DKA can be deadly.

3:45 PM: Run up to the bus stop to meet Ryan. Before diagnosis, he walked the third of a mile home with the other kids. The transportation department doesn't feel comfortable dropping him off without a parent in sight, so now I go up to the stop each afternoon.

5:00 PM: Lantus time. Ryan gives me a "9" for the shot, which makes me happy.

5:30 PM: Dinner, dinner carbs, dinner boluses. Jake is back in range, so that's a relief. My infusion set is stinging when I bolus, so I change the site.

6:30 PM: John calls from his business trip to Orlando. I can tell from the way he's talking that he's low. I suggest that he test or drink a regular soda. He reassures me that he's not all that low, and he's drinking a coke, and with colleagues. I hope they overhear him and are keeping an eye on him.

8:30 PM: Bedtime blood sugar checks and snack for Ryan. Ryan is 99, his lowest pre-bed blood sugar so far.

9:00 PM: I nod off next to Ryan, possibly before he even falls asleep.

10:30 PM: Wake up, check Ryan's blood sugar, it's a comfortable 137. Downstairs for some emails and dishes and me-time, before heading back to bed.

Not all days are like this, and the nurse phone calls are slowing down as we settle into a routine for Ryan and begin to understand our respective expectations. But believe me when I say that, when the phone rings, and it doesn't say "County Schools" on the caller ID, I breathe a little easier!

Four of a Kind.

Here we are again, in the throes of diagnosis. Ryan, who will turn 8 in May, has diabetes.

Except, this time, the throes is less of a whirlwind and more of a sigh. A long, sad, sigh.

When Jake was diagnosed 16 months ago, I was surprised. Even though John and I both have it, I always felt that we might get lucky with our kids, considering that it is nowhere in either of our families. I had high hopes for that 17% chance of 'passing it on' that we'd been given. And, statistically speaking, I think those hopes were not unjustified. But it was still a shock.

Ryan, since Jake's diagnosis, has spoken of "when" he gets diabetes, not "if". I never wanted to think that way, never spoke it out loud, but certainly felt like our 17% chance had been blown out of the water by Jake's diagnosis. If it happened, I hoped he'd be older so that he'd have more days with normal blood sugars.

As many of you know, diabetes in an 8 year old is a very different beast than diabetes in a 13 year old. There is much more to process regarding school (we're currently in a mini-battle with the bus driver about accommodations) and much more for me to do. Jake has never asked me to give him a shot or prick his finger, but Ryan needs that kind of assistance. Five days in, though, and he's already successfully tried pricking his own finger.

Once again, we caught it very early. He was not at all unwell, in fact it was just an odd feeling about his sleeping patterns and overall mood that prompted me to test him. We spent just a few hours at the pediatric endo's office, skipping most of the training and just focusing on his starting doses, and then we were on our way.

Ryan's attitude has been tremendous. He was happy when he realized that now he'll get an afternoon snack at school (like his 2 classmates who have diabetes. Yes, both of the kids at his school who have diabetes are in his class. It's a tremendous help.) Before we left for the doc, when I didn't want to say for sure that he had it, he asked me, "what if I have diabetes?" and I said, "well, first of all, welcome to the club!". His immediate response: "can I run for President?"

Obviously he has my vote!

New Pump Ennui

My Cozmo pump broke this past week, literally 1 week after the warranty on the pump expired.

The "next pump" decision was an easy one. The pod bump freaks me out (some of us don't like tubing, some of us don't like bumps) and my billing fiascos with Medtronic are not yet a distant enough memory. Plus, Jake uses an Animas Ping, so it makes sense to deal with one company.

I started pumping nearly fourteen years ago as part of a study to determine if insulin pumps were a better alternative for managing first trimester lows in pregnant women. Today, pumping during pregnancy is the standard. Though I came to pumping after the introduction of teflon cannulas, my original pumps were durable workhorses that had none of the smart pump features we see today.

The last time I went 'pump shopping' there was a lot to consider. New features, different colors, cartridge sizes, tubing vs no tubing, food databases, bolus wizards, remotes and PDMs. It was exciting, and the 'new tool' element had its usual motivating effect.

This time, though... well, I'm just not feelin' it. Not much has changed in the last four years (outside of CGMS integration, which is a moot point for me until my insurance decides to cover sensors). Maybe it's the 'done deal' element of this next pump purchase, maybe it's the similarity between my old pump and my new pump, or maybe I've just got too much going on with my life outside of diabetes these days.

But I think, mostly, it's the fact that I'm wrapping up year #24 with diabetes and, honestly, I'm tired of it. That weariness is exacerbated by the fact that I see Jake's future less as one that might hold a cure and more as one that will depend upon ever-more-expensive technological solutions. It's laced in the fear that pumping itself could be put out of our reach if John were to ever lose his job, and our health insurance. It's weariness, and feeling overwhelmed, and for the first time in a long time, hating my non-functioning pancreas.

Sometime today I'll dig out a pen and fill out the order form. Then maybe today or tomorrow I'll fax it over to Animas. I know insurance will be kind, we have excellent coverage for now, so the new pump should be here within the week. And I'll re-connect and resume managing diabetes with the best tools available to me. Maybe I'll order the pink Animas, or a funky new skin for it. Or maybe, once connected, I'll treat myself to an afternoon at the bookstore or a new outfit. And hopefully I can shake this ennui, because I think we can all agree that diabetes doesn't do well when you're bored with it.

Giddy, over a meter

I've had diabetes for 23 years, and have been using an insulin pump for 13. My 'diabetes life' has always included diabetes technology - starting with my first, book-sized accu-chek meter. I've used probably every non-pump-specific meter that's come along since 1986. I've loved each improvement, whether it be the drop from a minute-long test to 30 seconds, a smaller sample size, or strips that don't require you to change a code somewhere on the meter.

The enhancements that make me the happiest are the ones that, in some way, make diabetes technology work for me. By that I mean, things that make it easier for me to test, and easier for me to use the data. I am not the kind of person with diabetes who successfully writes down numbers and carbs and doses. I have misplaced more logbooks than I care to admit, and I've been guilty of only looking at the info in the week prior to an endo appointment. Which is ridiculous, when you think about it, because half the value of testing blood sugar is to spot trends and fix trouble areas. Sure, I can make on-the-spot dosing decisions based on a number, but that's only part of the equation.

So a few weeks ago I started using the new Bayer Contour USB (see disclaimer below). The folks at Bayer sent me a meter for my review. As always, they've asked for an honest evaluation of the product.

And I'm not sure how to do that without sounding downright in love with this meter. I spent the last day or two trying to find something I don't like about it. And I can't. This meter is just plain awesome, and I don't care how much of a diabetes nerd I sound like!

How do I love thee, USB? Let me count the ways...

1) Look and Feel. It's snazzy. It's about the size of a one touch mini, but it sacrifices none of the fancy features of a larger meter. The bright colorful display is easy on my (old) eyes, and the simple three-buttons are easy to use.

2) Data on the meter. Yes, there are many meters out there that store data and allow you to scroll through reports. The Contour USB is as good as any of them, easy to navigate and read. I really can't emphasize enough how easy it is to read. Blood sugar values are displayed prominently, color coded based on range (high, low, and in range each have their own color). Notes about the blood sugar result scroll below the number: "High blood sugar, before meal". This keeps the display clean and un-cluttered.

And the Contour USB has one simple feature that I love (don't laugh): it's obvious which button you use to turn it on, and it's obvious how you access the logbook (by pressing the button next to 'logbook'). Perhaps I'm an impatient gal, but I've often struggled to figure out what combination of buttons gets me into a meter history, and how to move forward and back through records. This meter is super easy in that respect.

3) Putting data on my computer. OK, again, I'm going to reveal my lack of patience. I work with computers all day. I understand software. Yet I have persistently struggled with software to organize and review my blood sugars. I get discouraged by not knowing how to quickly get where I need to be in the system. I get annoyed when the computer that has the software crashes, or is unavailable to me. I lose the damn cable. Often.

Yes, those are all things that I could work around by changing my behaviors, but now I don't have to. The Contour USB has the software on the meter, and a built-in USB connection. It took me all of 5 minutes to install and set up the software on my computer. If I'm on the road with a laptop, I can install it there. I can install it and download data anywhere at a moment's notice, without CD or cable. Sure, I don't have much occasion to download my diabetes data on the fly, but I'm thrilled with the plug and play software, because it knocks out a whole bunch of my excuses for not keeping blood sugar records.

4) Understanding the Data. I've used other blood sugar tracking software, including Bayer's, and I've hated it. The things I want to do: view specific date ranges, make notes, and just print the darn info out, have been cumbersome. The Glucofacts Deluxe software on the Contour USB is incredibly intuitive. Without reading a single manual or handy quick start guide (I know, that's bad, but it's the way I am), I had a printout of my logbook for the last week, plus a nifty graph illustrating just how often I run high in the afternoons, in about 7 minutes. I know my averages by time of day, my standard deviation, and my lowest lows and highest highs.

5) The little things.

• Did I mention it's cool? My kids even think so.
  
• It's small - it fits nicely on the miniscule 'shelf' on the treadmill. I can put it in my pocket with strips and lancet, and travel 'light', diabetes-wise.
• It has a light for testing in the dark. I don't know why ALL meters don't have this. What good is a tiny sample size if you can't see well enough to get blood on the strip at night? (Confession, I did have to look up how to turn it on in the manual. But that was the only thing I couldn't figure out intuitively.)
• You can set reminders for follow up tests.
• It uses the no-coding, easy-fill Contour strips I love. No other strip has worked as well for me - I almost never have to re-test due to not getting enough blood in the strip, even when I'm low and shakey.
  
• It has a rechargeable battery. I'm a tad bit worried I'll misplace the charging cord. But if I do, I can pop the meter into the USB port on my computer, and charge away.

Simply put, this is a meter that meets my needs - and goes above and beyond with convenience and ease-of-use. On top of all that, it's the kind of diabetes technology that motivates me. I'm a big fan of using diabetes gadgets to lift me out of a slump, by shaking up my routine or offering a new feature. I think that this meter, with its no-excuses access to my blood sugar information, is going to help keep me out of those slumps.


Disclosure: In 2004, I won the Bayer Dream Fund contest. Proceeds sponsored the publication and free distribution of my book, "When You're a Parent with Diabetes". I have not been under contract with Bayer since 2006, and am no longer a paid spokesperson for Bayer.

Yes, we are brave.

In early 2007, the diabetes O.C. had a conversation about bravery, triggered by a post about being called 'brave' by someone without diabetes.

My take on it, back then, was that we are brave, in that as people with diabetes we keep plugging away and we don't let the challenges of diabetes completely overwhelm us. We are brave in that we don't give up.

Well, I'd like to re-visit that conversation, this time as a parent of a child with diabetes. And I'd like to tell you that my son is Brave with a capital "B", strong and courageous beyond his twelve years.

Last night was our first pump set change. Jake was a superstar during training, when I put the infusion set in his skinny leg. I swear, if the kid has a subcutaneous layer, you'd never know it. During training, and since, he only mentioned once that it hurt - and then only after re-connecting for the first time (and wiggling it around.)

Last night we went through the steps of prepping the pump - still with saline - and he said he wanted to try inserting the infusion set. Now, the 30-degree set that Animas uses is not a small contraption. And you can see the needle quite clearly. And it's a long needle. Only a small portion of it goes under the skin, but it's impressive.

Jake hit a wall. His fear of the needle and how much it would, or could, hurt, got the better of him. I spent half an hour discussing, encouraging, begging. I told him that he *could* do it, and that pumping would have big benefits that he would love, and that it would get easier. All of this fell on deaf, distraught, ears. Eventually I told him he didn't have to start the pump now, or ever, if it wasn't what he wanted. And then I laid down next to him and fought not to cry while he fought to stop crying.

Five minutes later he said, "I want to try it again." So I prepped another infusion set, and handed it to him, and he did it. And it hurt for a few minutes, but he kept it in until it felt o.k.

That, my friends, is brave. Knowing that it will hurt, worried that it can hurt more, but climbing back from a place where all you can think is that you are too scared to do it: that is brave. And I was brave, too, in trying to encourage and reassure him when all I wanted to do was throw the pump infusion set in the trash.

Diabetes isn't always so challenging, but in moments like this, we are brave.

More Nick Jonas - a response

This is a response to Scott's recent post about Nick. Scott moderates comments, as is his absolute right, so I thought that rather than put him on the spot to publish or not publish my comments, I'd just post here.

I have two sons - one is 7 and is a big Jonas Brothers fan, one is 12 and is so over them, but does have type 1 diabetes.

The lyrics of the song "A little bit longer" don't promise a cure - it actually says 'waiting on a cure but none of them are sure'. I think that the experience of hoping for a cure is part of most people's experience with diabetes, at least in the beginning. You have to let the newbies have their experiences -- and their hope. In fact, newbie-fueled hope is essential to sustaining research! And "I'll be fine" doesn't have to mean a cure. Maybe Nick already knows this, maybe he knew it when he wrote the song, but in the hospital at the time of his diagnosis, he really did only have to wait a little bit longer to be 'fine'. It's been 23 years for me, but I can recall that feeling upon diagnosis - that "oh my god am I going to die?" feeling. Hard at 18, for me - brutal (I can imagine) at 12 or 13 years old.

Consider this, if you can't recall the fear at diagnosis. When Jake was diagnosed, he was not very ill. Still, because it was midnight, we went to the emergency room. Pulling up to the ER he said to me, "The Emergency Room?? It's that bad??". Here's a kid who knows diabetes, knows you can live with it, and isn't feeling deathly ill - and he was scared by the ER sign. Imagine how kids who don't know diabetes and are feeling awful react when they get hospitalized and hooked up to IVs and such. Scary. And definitely a time when you need to hear, and believe, that you'll be fine.

I don't need each of my diabetes "role models" to represent all the facets of diabetes. My god, it would be exhausting if everyone tempered their hope and enthusiasm with constant reminders of the threat of complications. Personally, I think Nick is a nice balance to the fundraising ads (from both JDRF and ADA) that blast the list of diabetes-related complications in an effort to raise much-needed funds.

I heard Nick sing that song at a concert this summer (through earplugs, and over the screaming of thousands of teen girls). I don't recall any mention of a cure. He spends a *lot* of time talking about how diabetes hasn't slowed him down. That, to me, is his 'fine'. No guarantees about a life free of complications, but proof that diabetes doesn't have to win any given day.

Thanks Nick Jonas

While I was volunteering at my son's school yesterday, a fourth grader spotted the tubing from my insulin pump peeking out below my sleeve. Being 9, he promptly asked, "What's that?". Being me, I promptly replied, "That's part of my insulin pump." He asked a few more questions, which I answered, and then he turned to his friend and said, "That's just like Nick Jonas."

Me, compared to Nick Jonas. Not so much a big deal in the grown up world, but suddenly, according to the fourth graders waiting in line on Picture day, that wire connected to my arm was not the least bit creepy, all thanks to Nick Jonas.

Awesome!

A Tale of Two Docs (in which One gets it Right)

A few years ago, I had an appendectomy at my local hospital. It was a smooth experience all around, in and out of the ER/Hospital in less than 24 hours, with decent blood sugars considering the stress, pain, and infection. I raved about the experience, and noted that the only less-then-perfect part was the anesthesiologist who was, if I may speak frankly, something of an ass.

I remember lying on the bed in the pre-op area discussing my blood sugars. I pointed out that they had held steady throughout the afternoon but were trending higher. What I wanted to say was, "I know my numbers are high - I've been worried about going low while not being able to eat. I think I should take more insulin, but since I can't eat, I can't treat a low, so what should I do?" What I got out was, "I know my numbers are high..." before the doc standing over me cut me off with, "they're too high. We'll manage it from here."

Now, I'd like to think I'm the kind of person who could stand up to that, and maybe I am when morphine's not involved, but this was a guy who was about to be in total control of everything about me for a few hours. Asshole or not, I didn't want to piss him off.

They managed me well enough through surgery - one +300 excursion was addressed with a bolus (they kept my pump on). In hindsight I would have asked about a temp basal rate to keep that 300 from happening, but it all worked out.

Last week, I underwent surgery again, this time in Richmond (because, funny enough, the local docs prefer not to operate on type 1's. Well, at least they know their limits.) This time, I had plenty of notice, so I had stopped eating the night before for a 2:15 PM surgery. That, my friends, is what I like to call an excellent opportunity to test basal rates!

Long about noon I realized that my mid-day basals are a little too high (lazy way of covering snacking!). So I decided on a 70% temp basal rate and coasted through the pre-op steps with blood sugars in the 115-120 range.

After the (fantastic) nurse was done getting me ready, I met with the anesthesiologist. She sat down, reviewed my chart and asked me how my blood sugars were running. I told her about the 140 - 160 range of the night before, and my success with a 70% basal rate throughout the late morning/early afternoon.

Then, dear reader, she won my heart (or at least my non-functioning pancreas) by saying, "We can go with IV insulin, but we like to have our type 1's keep their pumps on if possible. How confident are you in that basal rate?"

I said, "let me check my blood sugar once again. It's been an hour since the last check - if I'm still in the 120 range, I think we're good to go."

She agreed. I was 118. I showed her and the nurse anesthetists how to wake the pump up and shut it down if needed. Pump remained on through the 2 hour procedure. With the exception of a few hours overnight, when my numbers inched up as high as 250, I coasted through the next 24 hours with mid-100's.

But it's not the numbers that thrill me, so much. It's the doc. Sitting down, asking me how I was managing my diabetes, asking me if I wanted to keep my pump on or switch to IV insulin. Asking me.

It shouldn't be so shocking, a physician consulting the person who's had the disease for 23 years. And it's not the first time it has happened. But it is so remarkably nice when it does happen, don't you think?

PS: I'm recovering very well and enjoying great blood sugars. I don't know if the better numbers reflect the lack of stress now that my health issue has been resolved, or the fact that I have all the time in the world to check blood sugars and look up carb counts. Whatever it is, I'll take it!

PPS: For those in the area, I highly recommend Johnston Willis Hospital. Excellent care and wonderful people, from start to finish.

Article on Diabetes gets it right!

I know we shouldn't be so shocked when a non-health publication offers up clear, well-researched and common-sensical diabetes information, but aren't we always pleasantly surprised?

Bob Legere of Chicago's Daily Post did just that in addressing recent Fan Furor over Jay Cutler's night on the town.

Check it out for yourself: Alarm over Cutler's diabetes way off base

Tip o' the hat to you Bob!

Confirmed

ADA: Diabetes, Pregnancy, and Depression.


When I was writing my book, I repeatedly search for information on any documented connection between diabetes, pregnancy, and post-partum depression. I couldn't find any, and I couldn't get any professionals to speculate on a connection (understandably).

But I always felt that diabetes and pregnancy and depression had huge potential to interact. We know that diabetes increases your chances of experiencing depression. And we know that a medically intense pregnancy increases your chance of post-partum depression. To me, it seemed logical that these factors could come together to increase a diabetic woman's chance of experiencing pregnancy-related depression.

I snuck a few references to this idea into my book, though they lacked the "studies show" or "experts agree" label. Depression is so much harder to address and manage if you think that there's no reason you should be feeling depressed. Women who have just given birth often fall into that trap - "I have a gorgeous new baby, why am I struggling so much?" I think it helps to know that there are so many things that could contribute to depression - including the medically intense experience of a pregnancy with diabetes.

Crime and Punishment?

I glanced over at Jake this morning and realized I couldn't see his medic alert necklace. Asked if he had it, and he sheepishly replied that he had lost it. When? I dunno. Where? I dunno. Can you remember when you had it last? Um, P.E. class? I dunno...

There a few 'crimes' here, of course. One, he lost a necklace he's supposed to wear all the time. Two, he failed to tell me once he realized it was gone. Three, he went weeks without telling me. Four, the damn thing cost $60, and that just stings!

It's my job as a parent to make sure that he's safe, of course. And I'm also trying to help him to become a responsible young man who can keep track of his belongings. Then there's the fact that he needs to be an active partner in his diabetes management - to work with me, for now, to do what needs to be done, diabetes-wise.

But unlike a mis-placed cell phone, out of reach gameboy, or stolen-by-the-valet ipod, I can't seem to get mad about this. And I'm not really sure how to underscore the importance of the medical ID. I ended up (calmly) telling him that I was disappointed not that it was lost, but that he didn't tell me. Then I told him that he needs to wear ID, and we have to find a way for him to comply with P.E. rules (no jewelry)while wearing his medical ID.

I feel like a big soft pansy wrapped in a protective momma bear suit, but what else is there to do?

I'm sad that this is even an issue. I know that there are teen / diabetes battles ahead, and I'm just hoping I can find reasonable consequences for the more serious diabetes transgressions that have been known to crop up during adolescence!

FB 25 (sort of)

Here's my facebook 25, or actually 24 and a lie. Feel free to guess which is the lie!

1. This is about the 8th time I've tried to tackle this meme.

2. It contains one lie (because one of my favorite group icebreakers is the game "two truths and a lie").

3. In High School, I did a pretty decent Ed Grimley impression, I must say.

4. Growing up, we had a poster in our kitchen that read, "Just because you're paranoid, doesn't mean we're not out to get you".

5. I managed to avoid visiting the E.R. until I was 37 years old, when I went in with appendicitis, which I knew I had, thanks to quality television like Doogie Howser, M.D., and One Day at a Time.

6. I started using an insulin pump about 13 years ago. That's nothing compared to early adapters like Jackie and Sue Bates. I'm grateful to those who endured bent needles early on!

7. I have four email accounts. Yes, i may have a problem.

8. I'm working on making the leap from "person who takes great photographs" to "Photographer"

9. I firmly believe that words matter.

10. I often use way more words than I need.

11. My favorite piece of my own writing is the piece I wrote for Six Sentences last April.

12. Seriously, I get a huge kick out of the ETrade baby.

13. Kyle Busch once swiped my sharpie marker.

14. I'm the one who told Donna Woods "It's the most wonderful place in the world." during her interview, at Bertucci's in Natick.

15. I remembered that moment when I walked into Bertucci's in Natick on Tuesday night.

16. I used Khalil Gibran's "On Friendship" as a reading at my wedding ("Your friend is your needs answered..."), so I and my iight were represented during the ceremony.

17. I'm not much of a Fan-with-a-capital-F. Exceptions to that rule are Stephen Colbert and Lyle Lovett.

18. I have a freckle that is sort of shaped like Texas on the back of my left hand.

19. I believe in turn signals.

20. I don't believe in legislation that defines marriage as between a man and a woman.

21. I can ice skate, if I concentrate, but if I pause to smile I end up on my ass.

22. If you chew in my ear, I might have to kill you.

23. I'm not from here. (And never was that more obvious than during the recent election!)

24. Best 2nd baseman ever: Manny Trillo.

25. I can't wait to visit Ireland. It's the O'Donnell, O'Connell and Crowley in me.

More Luck, and a delicate dance of words

We had another positive school experience this week, as Jake's World Languages teacher contacted me to discuss the upcoming "food exploration" day in her classroom. As an electives teacher (and an itinerant one, at that) she was not part of our easy breezy 504 meeting last week, so I was particularly happy that she either got the memo or was being proactive on her own, and thought to check in.

We were playing a little phone tag, so I followed up with an email thanking her for her concern, and telling her that Jake will sample as he wishes (with the exception of fruit juice or regular soda), then report to the nurse's office to check his blood sugar and call me. We have no idea what people will bring in as snacks, or what will interest Jake, or how hungry he'll be for lunch (which occurs about 45 minutes after World Languages).

The teacher responded that she would "try to keep an eye on what Jacob samples that day just to make sure he is not overeating as I know that could be a problem."

I immediately had a vision of Jake, mid-croissant, being quizzed about how much he'd eaten. Overreaction? Likely. But clearly worth addressing, in the hopes of heading off la nourriture de police*.

My response:

Don't worry about him eating too much - this can be addressed pre-lunch, and, if he overeats, we'll use it as a 'teachable moment' about how to make food choices. Think of it this way, it's not a question of 'is he allowed to eat that?' it's a question of 'is he prepared to address any problems that might come up as a result of eating that?' and the answer is 'yes!'

Here's hoping that concept makes sense, in any language!

*I google translated "the food police". Who knows what they actually call it in France!

That Was Easy

The "Tale of the 504 Meeting" is all too often chock full of frustration and disbelief and "how can they not understand?". I've heard it from friends, I've read about it on blogs, and I've seen it on the childrenwithdiabetes.com forum.

Which is why I was surprised two weeks ago when the instructional coordinator at Jake's school called me to discuss setting up a plan. I was already researching and laying the foundation of a request for a plan, so to have the school reach out to me was a pleasant surprise.

We set up a meeting with his team and I went in today with a draft 504 plan (culled from examples at CWD). His teachers took 20 minutes of their team planning time to sit with me and chat about Jake in general, Jake since diabetes, and what they can do to ensure his safety and success at school.

They were also kind enough to spend a few minutes raving about what a great kid he is, how they'd like to have a classroom full of kids like Jake, and how accepting and responsible he's been so far with his diabetes. I returned the love by thanking them for their flexibility with snacking and testing, and I thanked his science teacher for buying him a diet soda when she was giving out candy as a reward (but I also made sure to tell them all that he can have the candy - we'll work around it as needed).

I presented my draft, point-by-point, and was met with nodding heads and agreement all around. His science teacher suggested adding that Jake will be given extra time to make up work missed due to time spent at the nurse's office, or time missed due to appointments. We all signed off on the plan, and the meeting was finished.

Now, I am not so naive to think that this is the end of all school issues. The teacher that broadcasted his diagnosis to an entire class wasn't part of the meeting, so I hope that he gets the point of the 504 plan (and the item about confidentiality in particular). I know that putting it in writing doesn't mean it will happen, but I'm glad that it's all written down, and without any drama or battles (so far).

Already

It has been just over two weeks since we found out that Jake has diabetes. Those two weeks included wrapping up school, our family Christmas party, Christmas itself, travel to Maryland, and a New Year's Eve party. I'm grateful for two weeks of school vacation to get into some sort of diabetes-management groove, despite the crazy busy schedule of the holiday season.

Here are some of the things we've already experienced:

• Clueless peers (granted, they are only 11). Jake told his friends at school about his diabetes, and one of them said (and I quote): "Dude, if you get a cut on your foot you could lose a limb. That happened to my grandmother!"
• Asinine teachers. Jake was low at lunch time at school, so I asked the nurse to pull him from class just prior to getting on the bus so he could check his blood sugar. She paged him out of orchestra class. After he left, the teacher informed the class that Jake has diabetes. Jake and I chatted about it and agreed that the teacher had absolutely no right to do that, and was very wrong. It is his favorite class, though, so he has not yet given me permission to raise holy hell about it.
  
• 117. This one's for my camp friends: 3 days in, Jake had his first "117" blood sugar. Fantastic!
• A football low. 49 after a neighborhood pick-up game.
• A pasta high. 267 after some yummy angel hair with marinara. I think it was the sauce I mis-counted.
  
• A random breakdown (mine). Four days in, I went to the grocery store and barely made it back to my car before losing it. Something about looking for kid-friendly snacks with reasonably low carb counts just hit me hard.
  
• An overdue breakdown (his). Before we learned the tricks of taking lantus, the nightly shot stung. That, plus a high blood sugar bad mood, gave Jake the opening he needed to set aside that brave face for just a few minutes. I was relieved that he did, and hope he lets it happen again.
• A sleepover. Across the street. I swear I sat up until about 2AM watching the house. Not sure what I was watching for but going to sleep was a tad more difficult than usual.

Many of my inner thoughts the past two weeks have focused on how incredibly hard diabetes must be for parents who get blindsided by their child's diagnosis. I know that a sleepover 10 days in would be 100 times harder if we didn't have a head start on this disease. Scratch that, everything would be 100 times harder.

Knowing the disease, though, is a double-edged sword. While I have fewer fears about his future (because I know that diabetes hasn't stopped John or I from pretty much anything) I also have a deeper knowledge of what diabetes can do. I was low the other night, and hating the way my body felt, and I thought of Jake experiencing a low, and that was tough.

People with diabetes will understand me when I say that you can live a 'normal' life - in the minutes between shots and injections and lows and highs. But when diabetes interrupts it can be a minor glitch or a major pause (which is to say, it can really suck.) Parents, whether or not their kids have diabetes, know how much we want to shield our kids from the bad stuff while at the same time preparing them to be able to manage the bad stuff. The diabetes bad stuff, unlike many of the far-fetched and largely unfounded fears that can crop up for a parent, is all too real for me.

12/17/2008.

In the midst of holiday prep and school demands and work and life, the world is swirling around me and I am standing still. And standing with me, overwhelmed but resilient and beautiful and perfect is my son Jake, who has just been diagnosed with type 1 diabetes.

At 8 PM on Wednesday evening we were enjoying a friend's birthday gathering. By midnight, Jake and I were at VCU Medical Center in Richmond, sent there by a post-party blood sugar of 440. By 1PM on Thursday, dizzy from a crash course in diabetes, we were sitting in my car outside a restaurant on our way home, testing our blood sugar side by side. How the hell does everything change so fast?

We have joked. We have talked. We have hugged. We have looked at each other with red-rimmed eyes. I have tried to quickly strike a balance between concerned and casual, and I am already finding it hard to achieve. I feel guilty - but have already told myself all the reasons why there's no point in 'going there'. I had a really hard time as the ER staff marveled at the fact that John and I both have type 1, but I was comforted by the sunny CDE who immediately guessed that we must have met at diabetes camp - and saw that as a good thing. I've half-heartedly explained that we knew there was a chance our kids could develop diabetes, but the odds were strongly in our favor and we'd always hoped it would never happen.

Deep inside my now constantly buzzing brain, I wonder if I always thought it would.

My heart is a little bit broken. For all of the finger sticks and needles and lows on the soccer field and swinging by the nurses office every day on the way to lunch and mean kids at school and the scary thoughts of complications. I do not want him to see me upset, but I also want him to know that its okay for him to cry, or scream, or just get really pissed off at diabetes. I want to make everything okay for him, but I know that it is a tough road and a big deal.

I know how lucky we are. We have already been wrapped in virtual hugs from family and friends and our amazing extensive camp network. I am so grateful he did not get very ill before diagnosis. It is not common for a kid with diabetes to avoid hospitalization and several days of in-patient diabetes education, complete with plastic fruit. I know that he'll benefit from our combined 63 years of living with diabetes. I know that there are advances being made daily, and that his management will benefit greatly. I am grateful that I work from home and can make the 15 minute drive to school at the drop of a hat, and that we have the resources necessary to keep him healthy.

I know a lot about diabetes, but I am certainly about to learn a whole lot more.

CNN article on Family Lanes/Special Medical needs

This article makes it seem optional for families/new travellers but not so optional for people with special medical needs.

" At San Francisco International, families with small children, travelers with special needs and passengers with medically necessary liquids were actively directed to the new lines by airport personnel."...

"The TSA imposed the restrictions on liquids in August 2006 after a plot was uncovered to use liquid explosives to destroy planes headed from London, England, to the United States. The TSA says liquid explosives remain a security concern, but the new procedures will allow screeners to check what kind of liquids are being carried aboard.

Passengers traveling with liquids, gels and aerosols like baby formula, insulin, cough syrup, contact lens solution and prescription medications will undergo additional screening that will usually take less than two minutes, the agency said."

I'm going to be seriously annoyed if, after 2+years of mostly ignoring the "must have prescription with you" rules they start enforcing it through this extra screening.

We fly next week, out of BWI. It will be interesting to see how they 'direct' people carrying liquid meds to the Family Lane. I'm playing dumb for as long as I can!

http://www.cnn.com/2008/TRAVEL/11/20/airport.family.lines/index.html

Separate Lanes at the Airport??

Apparently, the TSA thinks that people with medical needs (who are carrying insulin, for example), should go through a separate lane in security, along with families and people who are unfamiliar with airport security and need more time.

I have a big problem with this - I travel frequently and have it down to a science - my 3-1-1 ziplock bag and my insulin zip lock bag get packed in the front of my carryon, where I can pop them out quickly and place them in a bin for speedy inspection. I am a model traveller, while others around me fumble through their ditty bags (still!), pulling out full size lotion bottles and shampoos.

The thought of having to get into a designated (and slow) lane ticks me off. I hope I'm misinterpreting this, but it sounds like a recipe for trouble.

Not mention the potential privacy pitfalls!


WASHINGTON (AP) — Airports across the country will have designated security lanes for families to move through preflight inspections at their own pace, just in time for the busy Thanksgiving travel season.

The Transportation Security Administration is expanding its family lanes to every security checkpoint in the country by November 20. The popular lanes, which have been tested at 48 airports, provide a space for families and passengers who don't travel very often to move through security at their own pace.

People who carry prohibited items for medical needs — such as cough syrup, insulin, contact lens solution and breast milk or baby formula — will also be directed to the family lanes, the TSA said.

"Expanding these lanes to every airport and directing families and passengers with medically necessary liquids to them, increases passenger convenience and security," TSA Administrator Kip Hawley said in a statement Monday.

22 and 0

"You'd never know it from looking at your eyes."

That was my ophthalmologist's response to my saying that I'd had diabetes for 22 years. That's the exact response you want to hear, of course, but it was a stressful few minutes... hours... weeks waiting to hear it.

Obviously, I had my annual eye exam today. Except, it has been a smidge more than a year since the last one, and I had to force myself to make the appointment and go. Even though I know that the best way to handle eye complications is to be ALL over them, with timely exams and proactive care, making the appointment is an annual battle against the fear of the potential result.

During the exam prep, the technician who would be performing my vision test asked if I'd checked my blood sugar today, and what it was. I said, "which time?" and that (of course) threw her off a little. When I said "110 at noon, 190 at 8AM and 282 at 2AM" (damn pizza), she asked how long it had been fluctuating like that.

Sigh. "22 years," was all I could say.

To make things even more interesting, the doc's office has a new service. After they put the highlighter-yellow drops in your eyes, they leave you alone in the exam room while your eyes dilate... and show you an informational video about Diabetic Retinopathy, complete with an animated demonstration of lasers shooting into the computerized eye.

Seriously, I thought I was going to throw up.

After the video finished scaring the shit out of educating me, I had about half an hour of silence to psyche myself up for whatever the doc had to say. It ended well, as you already know, and for that I am incredibly grateful. Exhausted from worry, but grateful.

Well Done Lauren!

Have you seen the Ted Kennedy tribute video shown at the Democratic National Convention last night?

Prominently featured is a young woman by the name of Lauren Stanford, who met Kennedy at a JDRF Children's Congress, and was later invited to testify on the issue of stem cell research.

I first met Lauren and her mother many years ago at a Family Weekend held at The Barton Center. Within minutes of meeting the family, I knew that they were the kind of people you'd want to have in your corner - and I'm glad they've been and continue to be outspoken advocates and fierce fundraisers for diabetes.

Congrats on the national spotlight, Lauren!

Like George's, Only Different

We spent the week of the 4th in Northern VT, far away from the internet and cell phones and other distractions. Just golfing and swimming and hiking and eating and generally having a great time.

There were fireworks on the 4th, which I (like George wasn't happy about being so close to) but the best part was the kids with sparklers, and Ryan in particular.

Flickr Meme

My creation
Originally uploaded by dbkassie

Harder than it looks!

1. Kassie 2 of 6, 2. caprese salad, 3. SCHOOL SHOOTING, 4. tulip, 5. stephen colbert, 6. C'mon!, add a note,, wich one's your favorite?!, 7. Green River, 8. berry zabaglione, 9. Whose day is it, anyway?, 10. Brooklyn 2007 091, 11. Day 246: Wicked, 12. Brooklyn 2007 050


a. Type your answer to each of the questions below into Flickr Search.
b. Using only the first page, pick an image.
c. Copy and paste each of the URLs for the images into mosaic maker.

1. What is your first name?
2. What is your favorite food?
3. What high school did you go to?
4. What is your favorite color?
5. Who is your celebrity crush?
6. Favorite drink?
7. Dream vacation?
8. Favorite dessert?
9. What you want to be when you grow up?
10. What do you love most in life?
11. One Word to describe you.
12. Your flickr name.

You will be so Jealous

We went to a game in Baltimore last night (our first since we saw Buckholz's no hitter) and we witnessed Manny's 500th home run... from about 6 rows up from first base.

Nothing beats Fenway but Camden Yards is a gorgeous ballpark, and it was a beautiful night for a ballgame. Combine that with the fact that the place was swarming with Sox fans, and you've got a perfect evening.

See? Told ya you'd be jealous :)

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

Boston

Last spring, my husband started floating the idea of going up to Boston for a Sox game. He'd tried to take the boys last summer, while visiting his folks in NH, but the game was rained out.

Things started to fall into place when a pal of his had some seats available. Really good seats. Like, "look Ma, look at me waving like a buffoon while I talk on my cell phone" seats. Add that to a cheap flight from Richmond to Logan, throw in some Marriot hotel points, and you've got Labor Day Weekend in Boston.

And so it was that we found ourselves in Boston this weekend, of all weekends. Two gorgeous days in a really great city, with two boys old enough to walk around without too much whining. A truly hysterical (if not completely historical) trolley tour driver who had us falling out of our seats laughing. A smattering of actual history in the form of a stop to see Old Ironsides. And a city full of people who understand that "'R's ah fah losahs".

And the icing on the cake: Fenway Park.

We hopped the T from our hotel to the park and joined the throngs of fans descending upon the Fens. We settled in to our ridiculously amazing seats and started flagging down vendors. Ryan vowed to eat six Fenway Franks, but luckily his imagination was much bigger than his stomach. John, in a statement he would later gleefully regret, mumble-grumbled that the pitcher was some kid called up from Pawtucket. We took tons of pictures, just missed two foul balls, and chanted "Papi! Papi!" as part of Red Sox Nation.

At the start of the game, I looked at the Sox pitcher and thought to myself, "My god, he looks twelve." Long about the fourth inning, I turned to John and asked, "have the O's had any baserunners yet?" He looked at me curiously, then his face lit up with realization that the kid had pitched four hitless innings. Ok, that's cool, right?

Then, of course, came the fifth inning, when things got a little shaky, and I wondered if my veiled verbal acknowledgement had been a jinx. But after the Sox escaped that inning with the no-hitter intact, we began to hope that we were about to witness something spectacular.

And spectacular it was. As most of you know by now, Clay Bucholz pitched a no hitter in only his second major league start. With a little help from his teammates (hello, Dustin Pedroia!) and under the brilliant direction of Jason Veritek, he did what only twelve other pitchers have ever done in Fenway Park's 100 year history.

And we got to see it happen, alongside 40,000 fans on a gorgeous warm night at the greatest ballpark in the country, when the Sox called up some kid from Pawtucket.

$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!)