Old and Broken

Ok, so that's a maudlin post title, but I'm getting ready for my trip to Chicago and am just a smidge bummed out about the small pharmacy that I'm packing for a two day trip.

Insulin, pump supplies, a back-up syringe (at least I'm going to a place where I could probably acquire an infusion set in a pinch), synthroid, and the newest addition to the bag: benadryl and an inhaler.

< /whine >

In other news, the english language has hit 1 billion words. And I can't think of anything to say about that except, "Cool."

See you all next week after my big book signing trip and a little R&R with my Mom and sister in Baltimore!

Chicago ADA Diabetes Expo

If you are planning to attend the ADA Expo in Chicago this weekend, swing by the Bayer booth. Reps will have a limited number of copies of my book (free!) to give out.

If you are certain you'll be there, email me at kassie@parentswithdiabetes.com and I'll reserve one for you.

Next Food Network Star

I've been watching some of this series, plotting my own entry into next year's version (after I go to cooking school.)

For those who don't watch Food Network, the studios are located at Chelsea Market in NYC, a funky building with cool shops, restaurants, and bakeries. It's also across the street from the PR firm where I was interviewed as a finalist for the Dream Fund contest.

I paced the halls of Chelsea Market, killing time before the meeting. I thought it would be a good idea to pick up something sweet in case my blood sugar dropped (having exhausted my supply at about 2AM the night before). So I stopped at a newsstand at one end of the market and bought some skittles.

I'm not someone who spends a lot of time on clothes and hair and I think I actually had to go buy some makeup for this adventure, so I was nervous about how I looked.

As I handed the Skittles to the woman behind the counter, she gave me a friendly 'hello' and said, "well don't you look like a million bucks?" I laughed and said, "That's great, I only need to look like $100K!"

She didn't have to say anything other than, "That'll be $1.25". Instead, she said exactly what I needed to hear at that very moment. I left the Market with an extra measure of confidence and a tad bit more optomism. I felt like a star.

Few would agree that we can expect such kindness from strangers, but most would concur that it sure makes a difference!

Expectations

I've been thinking lately about what it is I (we) deserve when it comes to having diabetes. What is it that we can reasonably expect of the world?

I received a response from one of my Senators regarding my concerns about s1955. To summarize, he might be undecided. Or he might not be. Who can tell, he used politspeak. Anyway, he starts off his letter with a comment about the need to expand the health care benefit that employers voluntarily choose to offer their employees.

Basically, he starts off by saying health insurance is a privilege. And, basically, he's right. Employer-provided health insurance is a benefit, designed to attract workers. Job A offers a health care plan that covers everything and costs less? Job A it is then! It's a carrot, a motivator, a perk.

Except that it is an absolutely essential perk, and even the good Senator acknowledges this, as the focus of his letter is about how to extend this voluntary offering to as many people as possible. The whole point of health insurance (at least since the industrial revolution) is to guard against the illnesses (temporary or chronic) and injuries that can disable us. Stay well, and society benefits. Stay healthy, and society won't have to bear the burden of the cost of your care. Stay ahead of the game, and continue to be a 'productive member' of this village of ours.

The question becomes, I think, where do you draw the line? What can we expect to be included under reasonable costs that should be covered by health insurance?

Diabetes education and supplies, to me, fall clearly under the 'should be covered' heading. Pay a little now, avoid paying much, much more (in money and suffering) later. And why should those with functioning pancreas' contribute to the greater good of those with bad beta cells? Because my illness will cost them more if it goes undertreated.

The counter argument, I think, is that less effective health insurance spread out over a larger population could have the same net effect as decent insurance that is not fully accessible.

My response is to challenge the powers that be to strive for health care that is accessible to as many people as possible. Don't undo the hard work done by 46 states, all of whom came to understand that the whole point of health insurance is to help cover people who aren't 100% healthy.

There. That's what I expect.

Oppose s1955.

Thanks, Meredith

subtitle: The Benefits of IM

I took Jake and his friend out for Chinese food yesterday, a local restaurant with a decent buffet. About half-way through, I started to feel a little funky. The restaurant has a smoking section (I live in Virginia, after all) and smoke from one distant cigarette was really bothering me. I started coughing and feeling like breathing wasn't coming quite as easily as it should.

So I paid the bill and hustled on home, thinking that perhaps something I'd eaten contained a trace of shellfish, to which I am allergic. This wasn't like my usual itchy throat reaction to shellfish, though, so it had me a little concerned.

Once home, I took some benadryl against the chance that I had ingested seafood, and parked myself in front of my computer. I immediately started instant whining - I mean messaging - to my friend Meredith. She and I both work from home and instant messenger means that, despite 550 miles between us, I have a virtual office mate. Most days, it's just nice to have someone say 'hi' mid-day, but yesterday was one of those days where it meant much more.

She knew, based on what I was describing, that this was not an okay situation, and thanks to her I didn't talk myself out of going to the urgent care center down the road to be checked out. Sure enough, I was having some sort of bronchial spasms, essentially an asthma attack brought on most likely by an allergic reaction to something I ate. The benadryl helped the allergic reaction, but I needed help opening up the old airways again. A shot of steroids and a nebulizer treatment later, I was feeling much better.

I'm calling an allergist today to see what's going on with my wacky self. And I'm keeping that IM channel open! Ah, technology.

I (never miss an opportunity to talk about myself) Meme

I am: just getting warmed up
I want: good health and good luck
I wish: I enjoyed exercise more
I hate: see, "I wish"
I miss: Nana
I fear: anything bad happening to my kids
I hear: the hum of my PC
I wonder: as I wander out under the sky
I regret: not studying abroad
I am not: shy
I dance: only when drunk
I sing: songs for every occasion (give me a topic, I've got a song)
I cry: at parades
I am not always: as together as I seem
I make with my hands: scrumptious birthday cakes
I write: best after midnight the day before it's due
I confuse: the names of my cousin's kids
I need: a jacuzzi tub
I should: see "I wish" and "I hate"
I start: project after project
I finish: a thought now and then

Speaking of Chocolate

I must say I enjoy a little truth in advertising. Last night I saw a new Milky Way commercial where a guy is dropping his date off and seems to get rejected (or at least doesn't get the lovin' he was hoping for). He returns to his car and opens a milky way bar which is not a candy bar but is instead a voluptuous woman who proceeds to tell how awesome he is.

Offensive? A little. Right on target? You betcha. Food is love, baby, and they might as well come out and say it. Little foil-wrapped drops of chocolate are called "Kisses" and "Hugs" for a reason, you know.

Bolus Worthy

I once dated a guy who noticed a few cans of regular coke in my kitchen, and immediately assumed that I was 'cheating' by drinking regular coke (for obvious reasons, the relationship didn't work out.)

My reaction to his comment was actually not about his take on how to manage my diabetes but instead was about how totally unworthy regular coke was (and still is) as a 'cheat' item. I developed diabetes after the diet food market started to take off, and five years after diagnosis, I couldn't stand the taste of the regular stuff. Which is what makes it an ideal reaction treatment - no danger of diving into it unless I actually need it.

Now that I have the flexibility of a pump and carb-counting, from a diabetes perspective there are few completely off-limits foods. But in an effort to stay on track health-wise (and to make sure the 3 days worth of insulin in my pump actually lasts three days) I have to decide whether or not a high-carb item is 'bolus worthy'.

For my sons' Easter baskets, I bought Sweettart jelly beans - the kind of sweet/sour combination that kids love but I can't stand, and therefore not a temptation. Jellybeans may be bolus worthy but I've yet to figure out how to bolus for them without going through a nasty spike. Other items in their baskets, like cheap chocolate in the shape of race cars or spongebob, are specifically chosen for their non-bolus-worthiness. If I'm going to splurge on chocolate it's going to be the good stuff.

Nestled on the top of each basket (with spares hidden away in a cupboard) is the one Easter basket treat for which I will gladly dial up a dose. Best served when slightly stale and chewy, I'm talking about your friend and mine: the marshmallow peep.

Yellow only, please. The blue and purple ones are just wrong. And no, before you ask, I just can't get on board with the halloween and christmas peeps.

Five of them contain more carbohydrate than my average lunch. But they are non-fat, which bumps them up a notch on the food pyramid, right? And their carb value is the perfect number (8 per peep), as my insulin-to-carb ratio most of the day is 1:8. That's the kind of math I can handle.

What indulgent items do you consider bolus-worthy?

Book Debut: Chicago AACE Meeting

The first copies of "When You're a Parent with Diabetes: A Real Life Guide to Staying Healthy while Raising a Family" will be distributed at the upcoming American Association of Clinical Endocrinologists (AACE) meeting in Chicago, beginning with the Exhibitor's Wine & Cheese Reception on the evening of April 27th.

If your endocrinologist is attending this meeting, please encourage him/her to visit the exhibit hall (Booth 121 in particular!) to receive a free signed copy and (at the Thursday reception and on Friday morning) meet the author!

The best part about publishing this book through the Bayer Ascensia Dream Fund is the fact that the book will be distributed for free. Once the free copies are gone, it will live on thanks to Hatherleigh Press, but thousands will be available thanks to the Fund. And I'm very grateful for that aspect of this adventure.

Can we Count on 911?

You've probably heard the scary story of the young Detroit boy who called 911 in search of help for his ailing mom. Instead of receiving help, he was berated and ignored by the 911 operator. Three hours later, he placed a second call and was chastised again. Police eventually arrived, too late to save his mom.

On the other hand, we have the news yesterday of a teenage girl from Buffalo, NY who has been accused of making 1,000 fake 911 calls, some lastimg nearly an hour, during which she taunted operators by saying, "You can't catch me." And I've seen some statistics this week that point to just how many 911 calls are pranks or accidental. I certainly don't envy the job of a 911 operator, but I surely hope I get one that believes me - or my child - until all evidence points to the contrary.

As a person with diabetes, I'm aware of the importance of teaching my kids how to use the 911 system. Being married to a person who has had bouts with hypoglycemic unawareness has made this need even more apparent. So we've gone over 911 with Jake, and are starting to do so with Ryan.

We talk about what constitutes an emergency, and we've introduced our kids to uniformed police officers and firemen, and told them that it's important to unlock the door for these folks during an emergency.

But now we need a strategy for when 911 thinks they are playing a joke. I've posted the names and phone numbers of two trusted, usually home neighbors, along with a very simple phrase: "My Mom/Dad has diabetes and needs help now" (in the hopes that some detail will lend authenticity to the call). I debated role playing a scenario where the 911 operator questions the call, but am not sure if that is too much potentially unsettling information. "OK, Jake, if Dad's passed out and Mom's not home, call 911, and if they don't believe you, say XYZ"... well, we'll get there eventually.

Scary, though, that this system works so poorly.

Pump Pudge

The Purple Pump has given me some new freedom and flexibility around food. This is, of course, a good thing. It means I can eat breakfast again without fear of sky high numbers. It means I can eat pizza and not wake up at 300. Overall, my newfound Carb/Math skills (well, button pushing skills, really) have resulted in better numbers for a wider range of food.

Which, of course, means weight gain. Poundage, baby. A little extra pudge. Jeans are gettin' snug. Pounds lost between my December and March endo appointments have returned, and brought a few friends along for the ride.

Now, I know what to do about this, of course. But I'm chuckling at the fact that I didn't see this coming and try to avoid it.

I'm balancing my displeasure over a little weight gain with my happiness over blood glucose results. Now I just have to put the breaks on the carb party that has been my life for the past few weeks, as I've experimented with carb-to-insulin ratios and the carb wizard on my new Cozmo pump. We've established that it works, no more excuses! Would someone out there mind giving me a six a.m. wake up call so I can go for a walk tomorrow??

Red Sox Nation

We spent Sunday at Camden Yard, watching the Sox defeat the Orioles, 4-1.

We had amazing seats: 5 rows up from the field, just to the right of the Orioles dugout. We splurged on souveneirs, hot dogs, sodas and cotton candy (can you say, "Mega Bolus"?). It was a cool, clear, perfect day for baseball.

Climbing the steps to the concourse during the second inning, I almost caught a foul ball. Actually, that's pretty much a bold-faced lie. Climbing the steps with my back to the field, I noticed EVERYONE around me jump up in anticipation of the foul ball (a high pop fly, thank God) coming our way. I froze in my place and covered my head. This may explain why I didn't go too far in Little League, and failed as a field hockey goalie.

But at least I wasn't the guy in the upper deck who caught a foul, then proudly held up his Yankees cap and jacket, sparking a stadium-wide chant of 'Yankees Suck.' Which, by the way, sounds really awful and really funny coming out of the mouth of an almost four year old.

Anyway, it was a great day, and a great way to spend Jake's birthday. And, because a Southwest flight from New England to Baltimore PLUS a hotel PLUS tickets (and good ones, at that) is STILL cheaper and easier to pull off than a trip to Fenway, we were surrounded by Sox fans. I'd guess a solid third of the crowd was wearing a B on their cap.

It's a Red Sox Nation, Baby!

Happy Birthday, part 1

Today is the anniversary of the day I became a Mom. In some circles, this is known as Jake's birthday.

Jake's arrival was a scary one, despite a carefully planned and closely monitored pregnancy. The week before his birth, I had missed my pregnancy clinic appointment due to the April Fool's Day Blizzard of '97. 24 inches or so of snow had fallen on Boston, and the clinic was closed. I called in to ask if I should be seen anyway - having had some protein in my urine the week before, and a fair amount of swelling. They said it was fine to wait until the 8th.

I probably didn't tell them that I had a train trip to Philly planned for the weekend, to attend a baby shower thrown by my family. Maybe they would have told me to skip it, maybe staying home would have slowed things down. I'll never know.

Saturday, April 5th, I spent the day with my friends and family. All of my cousins came, bearing gifts and sharing their baby advice. It was a month after my Uncle Bill had died of pancreatic cancer - we were all in need of family contact and a celebration of life.

By the end of the day, my feet were swollen terribly - I'll never forget the pained look on my father's face as I propped my legs up on the coffee table. He'd seen his brother suffer from edema during his last days, and the image (and its association) was just too fresh in his mind. Simply put, I did not look well, yet I protested, "I'm fine, I'm fine, it's just a little swelling."

My mom drove me back to New England on Sunday, parked me and my fat feet on the couch, and carried all the baby gifts up to our second floor apartment. We hadn't even undone the guest room - most of it was piled on the spare bed. Plenty of time to sort all that out.

The next day, at about 3PM, I realized that my knees were now puffy, and my legs were different sizes. This, to me, fit the bill of "unusual swelling." (My OB had said, 'oh, you'll know it when you see it.')

I called the OB on call and he said to come in. Drove myself into the city (foolishly turning down a co-worker's offer for a ride) and went up to L&D. Bloodwork was drawn and a few hours later they were about to decide whether to keep me there or send me home on bedrest. Then a crucial liver value came back elevated, indicating HELLP syndrome and earning me a spot in L&D. Damn, I thought, what's this going to cost me in parking??

9:30 PM. Mom had been home for all of 15 minutes when I called to say I was in the hospital. She was on a train back to me the next morning.

After 2 days of steriods and magnesium "the cure is worse than the illness" sulfate, the team of OB's offered me a choice between an induction or c-section. Feeling like I had been run over by a truck, knowing that I was no where near dilated, and taking a cue from the top doc who gave an induction a less than 5% chance of working, I opted for the section.

John and my mom got into scrubs while they gave me something to drink to keep me from throwing up. (Or so they said. It actually made me throw up, which I think reassured them that I had nothing in my stomach to aspirate.)

They wheeled me down to the OR and I admited, to the nurse, that I was scared. I waited until I was alone with the nurse to say this, as I didn't want to upset my husband and Mom. They, of course, were out of sight but not out of earshot, just beyond the not-yet-closed operating room door.

My big fear leading up to this point was the spinal. I knew I'd have to curl up to expose my spine to the needle. I was so bloated that all I could manage was a curl that felt like I'd moved an inch. "Perfect!" they said, and the spinal was in.

After I lay down, John came in and sat next to me, with my mom behind him for support. John turned to the anesthesiologist and struck up a conversation about the Red Sox. Hey, we all cope the best we can. We were 3 miles from Fenway Park in early April, there was all manner of hope in the air, and the Sox were a pleasant, if surreal, alternative to discussing what was going on at the time.

Surgery began and despite the 'drape', both John and Mom could see more than they expected. They joked that they saw a side of me that no one else has seen: the inside. Again with the coping!

At 9:47 PM, there was a hearty cry. "It's a boy!" they said. I almost didn't believe it. "Do you have a name picked out?" asked one of the ten or so medical professionals in the room.

My husband and I spoke our child's name in unison.

He was 31 weeks gestation. He was huge - 5lbs 4oz and 17 inches long. He scored two 8's on his apgars as a team of doctors and nurses and students checked him over. My mother watched the nurses like a hawk, determined to make sure that I got to see him before they took him off to the NICU.

Lying there, paralyzed from the chest down, all of this swirled around me. I was so tired, I just wanted to drift off to sleep. Then, in a moment of clarity, I opened my eyes to see a bundle held next to me.

Blanket and cap and tiny little perfect beautiful face, minutes old.

I gave him a quick kiss on the cheek, and he was whisked away to the NICU. The wonderful apgars gave way to respiratory distress, and he was intubated overnight, while John and I slept. In the morning, on my way from L&D to my post partum room, they wheeled me in to see him, laying exposed on a warming table. So tiny, with tubes and IV's and a heart-shaped disk lying on his chest, monitoring each beat.

Jake spent 2 weeks in the NICU, with a Red Sox rally sock in his bassinet. He amazed the doctors and nurses with his strength. He was transferred to Emerson Hospital in Concord for another 2 weeks of growing, monitoring, and learning to eat. On May 3rd, 1997, more than a month before his due date, the pediatricians at Emerson could think of no reason to keep him, and he came home with us.

I can't believe he's nine years old, today. Happy Birthday Baby Boy.

Brought to You by the Letter D

I still get my news from Boston.com. I enjoy keeping up with the news from the North, and will admit to the occasional evil chuckle when I glance at the weather report.

Tonight, I hopped on over for a quick check of all the news that's fit to print and up from the webpage jumped a restaurant review:

Cafe D in Jamaica Plain.

Of course, I thought what you're thinking (or what I hope you're thinking. Otherwise I'm the only one whose mind goes right to diabetes everytime I see the letter D, and that would mean I'm weird.)

So I'm hoping you can imagine my disappointment when I realized, after a split second or so, that "Cafe D" is not a hip, new, diabetes-friendly restaurant with seven choices of diet soda and a varied and healthy but fun menu (where all items are described with their ingredients and carb counts). With sharps containers in the bathrooms, a box of tissues on the table (so you can be all fancy-like and not lick your finger after testing) and priority seating for those with a blood sugar that's already dropping. A place where the wait staff don't mind taking back your soda because you suspect it might be 'real', and they don't look at you funny when you explain that, because of your gluten intolerance, you can't just take the bun off your hamburger, it must arrive never having made contact with said bun!

Hmmm. Anyone want to front the money for my first restaurant?

Ryan Names His Price

Ryan took his own sweet time adjusting to life without diapers. I tried all manner of 'programs', read him books, offered stickers, candy, his choice of prizes... nothing seemed to sway him despite his obvious readiness for the task.

One night, during a stretch of my husband's travel (meaning I'd been playing single parent and was particularly overtaxed), I saw Ryan exhibiting the obvious signs of needing to go to the bathroom. Desperately not wanting to have to change a stinky pullup at bedtime (well, way past bedtime, but that's another story), I encouraged, begged, cajoled, and eventually tried to bribe him to sit on the potty.

"Ryan," I whined, "I'll give you a dollar if you use the potty!"

Without blinking an eye, without pausing to think about it, my little 3 1/2 year old looked up at me and answered,

"I'll give you two if you leave me alone."

I tell you this 'old' story now, because last night he slept the whole night in his own bed in his own room. It cost my husband a five-spot.

We are so screwed.

Some Good Comes of the NYT Series on Diabetes

The series has sparked a 6 Million dollar donation from the Gerald J. and Dorothy R. Friedman New York Foundation for Medical Research to the Beth Israel Medical Center in Manhattan. This funding will allow the Center to provide services deemed unnecessary by most insurers. Yes, services like prevention, education, support and reinforcement. Not those essential services like dialysis that insurers would rather gamble on us not being around long enough to need. (I think I need to find an HTML tag for sarcasm.) Read more about this donation here.

Now, before you rush to defend the poor maligned NYT series, I do actually think that a lot of good came of it. Awareness, motivation, publicity - all of these can be a double-edged sword, but I agree that they are so necessary in the battle against the effects of high blood sugar.

However, I am still trying to figure out how we the people can be sliding into a collective diabetic coma, yet still stand by and watch something like s1955 make it out of committee.

Opening Day

My husband sat patiently through the baby care class that we attended after my first son was born. The class was supposed to prepare us for his arrival, but his premature birth meant that he was with us as we visited with our fellow new parents.

John's one and only question for the nurse:

"When can I take him to Fenway?"

Her advice, since he was a preemie, was to wait at least four months.

Mid-August, four month old Jake was in the stands to see a 20-4 drubbing of the Sox and the end of Nomar's hitting streak.

Said the gentleman in front of us, "For God's Sake, tell him he saw a win his first time out."

Said the gentleman next to him, "No! If he's gonna be a Sox fan, he needs to know the truth!"

Happy Opening Day!