Five Random Facts

I feel like a real blogger now, as I've been tagged by Six Until Me to share five random facts about myself. So here goes...

1) My middle name is Agnes, and I don't hate it (anymore). I am named Kathryn Agnes for my grandmother, my Nana, who was a cool and elegant New York lady and one tough cookie. I miss her and am proud to have her name.

2) I seriously considered - and still consider - going to school to become a librarian. Most of my friends agree that I am way too loud to pursue this line of work. And an MLS degree is a little too expensive considering the pay. But, to be surrounded by books all day? C'mon! Along the same lines, if cute little bookstores weren't a completely impractical business, I'd open one of those.

3) I totally preferred Parker Stevenson over Shaun Cassidy.

4) My sophomore year at Providence College, my room was right above one of the on-campus chapels. I felt that sleeping in on Sundays counted as going to church, as I was snoozing maybe 15 feet above the altar.

5) When I was in fifth grade I was involved with a group called CISV (Children's International Summer Villages). I was selected to represent my elementary school (along with Stu Abramson who, in an ironic twist of fate, would turn out to be my senior prom date) to attend a weekend program with other area school kids. The goal of the weekend was to be selected by your peers to attend a month long summer 'village' overseas (my year it was Egypt or Norway). I was not selected (neither was Stuey), but I did stay involved and participated in a Philly/NYC exchange weekend program where this really hip girl named Diane who lived right next to Central Park (and who was on crutches at the time, having been hit by a taxi crossing the street! How cool is that!!?) came to stay with us in Flourtown and I went to stay with her in NYC. The New York kids scared the bejeesus out of us by telling us horror stories about subway murders before we took the subway. I am still a little afraid of the subway, to be honest. But other than that it was good clean fun, and my first introduction to the world of 'camp'. Looking back, I am wicked impressed with my parents, who actually let me (as a fifth grader) pursue a trip to Egypt.

Lyrehca at http://thesweetnesswithin.blogspot.com/: consider yourself tagged. So what if you've only been blogging two weeks!

LowHemoglobinA1cNoKetoacidosis

Even though the sound of it is something quite atrocious
If you say it loud enough you'll always sound precocious
LowHemoglobinA1cNoKetoaci-doh-dis!

Umdiddlediddlediddle Eight-point-four umdiddlediddlediddle Seven-point-three*...

Summer of 1988 was my first year as a counselor at Clara Barton Camp**. Each year, the staff performed a skit for closing banquet. In '88, the skit was based on "Mary Poppins" and we wrote and performed such musical gems as the above excerpted song and "A Spoonful of Sugar Helps the Blood Sugar go UP!". Mary Poppins took a newly diagnosed Jane Banks into a chalk drawing of camp - where they learned a few lessons about diabetes, sang a few songs, and made a few jokes to entertain campers and parents. Jane returned from 'camp' with a new attitude toward her diabetes, just like in real life.

In my seven subsequent summers at camp we also butchered such classics as "Aladin" (when one of our best staff members arrived at camp with a fully written skit, having worked on it over the winter. CBC gets into your brain that way!), "The Wizard of Oz" (think, "If I only Exercised" in place of "If I only had a Brain"), and "You're a Good Man Charlie Brown" ("A Book Report on Clara Barton" instead of "A Book Report on Peter Rabbit"... because what girl has been through CBC and not done a book report on the old gal?).

It's amazing what overworked, underpaid, way too tired from checking the bloodsugars of a cabin full of campers at two in the morning young adults can come up with if you dangle free soda in front of them.

*yes, in 1988, an A1c of 8.4 was good and 7.3 was fantastic.
**not to brag, but I count 6 out of 35 T1 OC Blogs as being "Barton Girls". That's a whopping 17% of OC bloggers. And there's a mom of a Barton Girl under the parents section. How cool is that?

Part of the Solution

Whenever possible, I like to be part of the solution (and not part of the problem). This usually plays out in small ways, like letting a desperate driver into my line of traffic, or letting a person with 2 items and that "I'm about to lose it I'm running so late" look on their face jump ahead of me in line at the store. In bigger ways, it's something I consider when faced with larger issues, "how can I be part of the solution here?"

My sister lives in Brooklyn. She owns a car and works from home, so her world was not turned upside down this week by the transit strike. On the phone the other day I made a comment about how utterly ridiculous the strike was, and she gave me some of the other side of the story, reminding me that another side did exist. She raised a good point, in my mind - just how bad did things have to be for workers to agree to strike (and lose pay, and incur fines) just a few days before Christmas? She knows people who are on strike and suffering, and she knows people who are struggling to get to work because of the strike.

I don't know the whole story, and never will, and don't have the facts or energy to debate the strike. But I did want to tell you what a cool person my sister is.

She happened upon an elderly woman - using a walker - who had just been turned down by a car service. She stopped and gave her a ride home.

She organized a 6am run to Newark airport for two friends - and (via craigslist) tracked down a 3rd passenger who also needed a ride.

She stopped and gave 3 students a ride into Manhatten last night on her way to drop off some work.

And she brought 3 dozen donuts to some TWU workers and police officers picketing on the overnight shift last night.

That's what I call being part of the solution.

Raising a Bilingual Smart Aleck

Ryan (age 3.5): "Mommy, open this! "

Me: "No Ryan"

Ryan:"Mommy open this, open, open, open, OPEN IT"

Me: "Ryan, what's the magic word?"

Ryan: "Abre!"

For those who don't speak spanish or watch Sesame Street, "Abre" is "open" in spanish. We are now working on 'por favor'.

God Bless the Broken Road

I'm sitting here tonight sorting through the various posts and comments spurred by Gina's "Two Roads" post, which raises the question, "If you were given the chance to go back to before you were diagnosed and had two roads to take, one was the road that leads you up to the point you are at now with all that has come with diabetes and the other will lead you to a life without diabetes, which road would you take and why?"

I've been impressed and inspired by the debate. My heart has gone out to the parents of kids with diabetes, who seem to answer the question with a resounding, "you must be joking". My feathers have been ruffled by a few comments, mostly those that seem to speculate on why other people say what they say on this subject and try to associate one road or the other with acceptance, etc.

I'm one of the few people with diabetes who would have turned it down, given the choice. Even after reading Allison's thoughtful and well-written exploration of the different aspects of the question, I still think I'd skip the diabetes. Maybe it's the $147 I paid for insulin today (I keep coming across this topic on expensive days - my first response, to Gina, was written after a somewhat depressing review of health insurance costs).

Or maybe it's all the things about me that have little or nothing to do with diabetes. It's not the most interesting aspect of me (I hope), it's not the only thing I talk or think about outside of this circle. Outside of the O.C. and diabetes camp, it rarely comes up. It's not the only challenge I've faced, or will face.

I imagine my life so far - with all its challenges and rewards but without chronic illness - as the other road. None of my high school friends have diabetes. None of my college friends have it. None of my work friends have it. Type 1 diabetes is nowhere in my family. I believe I would have still met someone and fallen in love (people without diabetes do it all the time, I'm told) and I would have had children (perhaps even more kids). I'd still be the person that my parents raised, I'd still be an odd mix of shy and outgoing, I'd still be afraid of heights and I'd still harbor a secret desire to be a chef.

So take away the numbers and the highs, the guilt and the lows. Wipe the slate clean and restore health to the teeny tiny blood vessels of my eyes. Reset my kidneys. I'd love to explore my life without these challenges.

Of course I wouldn't be the person I am today. And I probably wouldn't know you (please don't be offended but I'd trade you for a functioning pancreas in a heartbeat). And believe me when I say I am truly grateful for the positives that this broken road has shown me - I spent the day addressing holiday card envelopes and every section of my address book contains people with diabetes, and I love them. But I still say there's a big difference between appreciating what diabetes has brought and choosing it.

It's Up to You New York?

Have you heard this one? The NYC Board of Health is requiring labs to report A1c results of people with diabetes, supposedly in an effort to better understand how pwd's manage their disease. Patients cannot opt-out of the program (another report shows that the city is working on that). A1c results are not submitted anonymously. They are submitted along with your name so they can track you down at a later date and discuss your diabetes care with you.

Here are some of the low-lights on the NY Times report on this, for me:

"Diabetics must control their blood sugar levels to prevent serious complications from the disease. " - hmmm, not quite. Perhaps lessen, perhaps prevent. But since there are no guarantees, even with tight control, doesn't this statement seem a little harsh?

"...officials hope to use the information to reach out to local doctors and, in some cases, patients, to urge lifestyle changes and other measures to better control the disease." - can you imagine getting a call from the Board of Health, from the government, suggesting you get your diabetes self together? I can just imagine the sensitivity involved in that phone call.

NYCBoH: "Hello? Ms. Zuchercrank? this is the board of health calling about your diabetic control. As a diabetic, we think you should know that if you don't improve your control, you are at greater risk for kidney failure, blindness, amputations and other complications. We just thought you should know. "

Ms. Zuchercrank: "Um, well, I'm having trouble affording enough blood glucose strips, and my pump broke down and I can't afford the co-pay on a replacement. Can you help me get more strips and a new pump?"

NYCBoH:"Well, no, but we're going to call you every 3 months to remind you what a lousy job you are doing."

I've heard the arguments in favor of such data collection and am unimpressed. I cannot get beyond the privacy concerns (sorry, I don't buy that the information will be kept from insurers) and I'd much rather see these kinds of resources thrown behind physicians and CDE's working so hard to encourage 'lifestyle changes and other measures'.

I think this just might be the boost that the home A1c industry is looking for, and if I lived in NYC I'd be scoping out suburban diabetes care right about now.

http://www.nytimes.com/2005/12/15/nyregion/15diabetes.html

Lost & Found

Oh the pain! The ignominy! The utter shock of it all!

I am a nerd. A lightweight computer chick. I can write in html without an editor (woo hoo!), make a Lotus Notes database dance on the web, and use all kinds of obscure MSWord features.

But it finally happened to me today.

After a week of gathering my thoughts, I sat down to do a rewrite of my first two chapters, requested by the publisher. I've been out of book mode for months, as the manuscript left my hands in early October.

Two, maybe three hours of kicking it around. Nip here, tuck there, expand upon a few thoughts where requested. Struggled a little bit with how to make the requested changes and preserve the friendly tone of the book.

Paused to save and rename the draft (using today's date as part of the name). Wrote some more, saved some more. Felt pretty good about it and decided to close it out for some reason. I don't know why. Why oh Why.

It's gone.

I had sent the draft to my laptop, opened it up straight from Yahoo mail (knowing it to be virus free) and saved it to... wherever. Turns out 'wherever' was a temp folder that gets created on the fly when docs get downloaded from the internet. Said folder is unfindable, even if you purposefully save the document.

Now, despite a dozen carefully constructed searches and the expertise of a much bigger nerd than I (M., that's a compliment), I cannot find it. If you see it, please let me know (sniff, sniff).

UPDATE: It's FOUND!

I decided to do one more search for it tonight (when I sat down to re-rewrite and froze up). This time, the file search turned it up instantly. I suppose the search function wasn't seeing the most recent documents? Lesson learned, step away from the computer for a few minutes next time!

I think I'll go buy a lottery ticket, I'm feeling so lucky.

The Office Christmas Party

I work from home so my office party basically sucks. Just me and the cats, hanging out, drinking some egg nog. We tried a Secret Santa once but the cats figured out who had them, and I wasn't happy receiving hairballs.

So, I'm reaching back into my memory and calling up a story of an Office Christmas Party of yore...

It was December, 2001, when I worked on-site for The Shriver Center. The highlight of the party - the only reason to go, in fact, was the staff dessert contest. This year, I was determined to beat Vadim, the guy from IT who'd won 3 years in a row. The previous year, I had managed 3rd place with my last minute apple cranberry tart (a suprising, non-chocolate, 'dark horse' entry).

I found my latest recipe months before the party. I tried to psyche out the competition, letting it be known around the office that Vadim was going down. Four dark chocolate layers, concealing raspberry preserves. An inch thick classic crustless New York cheesecake center. True buttercream icing with a layer of crushed walnuts around the side. Perched atop the center were a few sugared walnuts. It was gorgeous.

I was pregnant and vigilantly watching my blood sugars. Every craving I'd been denying myself was layered into that cake.

I paced the party, trying to guage reaction to my masterpiece. I'd go up to people I'd never met in hopes of winning their favor, on the off chance that they were one of the secret judges. Vadim was nervous - I could tell by the way he was eyeing the room and the dessert table, comparing my gorgeous creation to the decadent trifle he was said to have worked on until 2 am.

Rumors were flying... did the heath bars Vadim used in his trifle disqualify him? A quick check of the rules confirmed that store bought ingredients were perfectly acceptable. Did Vadim really make his own desserts, or was Mrs. Vadim his secret weapon? His dad, also an employee, denied this wholeheartedly. I believed him if only because I'd seen the glint in Vadim's eye when the subject of chocolate was brought up. We were simpatico, two connosieurs with an appreciation for a duel to the last crumb. In our little tango, there was no Mrs. Vadim.

Finally, it came time for the big announcement. I was a nervous wreck, sitting with my group at our table at the Watch City Brewery in Waltham. Third place was announced - some dessert wannabe from the genetics lab and her idea of a torte (ha!). I was relieved to have dodged that bullet. It was down to me and Vadim, and the buzz was palpable. And the second place winner was...

Me. I was crushed like the walnuts that graced the side of my cake. I barely had the strength to step forwad to receive my prize and crawl back to my table. Fer chrissake, who beats a PREGNANT DIABETIC in a dessert contest???

My only consolation was when Vadim came over to me and told me that he had tasted my cake and was certain I'd beat him. It was the best he'd ever had, and he wanted the recipe.

Not bloody likely, Vadim, not bloody likely.

no names have been changed because who among us is really innocent? ;)

Symlin Begins

First observation: it smells like bandaids!!

I took my first dose of symlin this morning and so far, so good. For a few minutes I wondered if I felt nauseous. Nausea is one of the two big potential side effects. Honestly, I can't tell if I am reacting to the med or to the power of suggestion. Regardless, it's pretty mild.

I read the starter kit info last night. It's now my understanding that symlin does two things. One, it slows down the emptying of the stomach, producing a more gradual release of sugar into the bloodstream. I'm imagining that the bonus here (aside from a more even release of sugar into my system) is feeling full longer and hopefully not experiencing the munchies that often follow a post-prandial high. Two, it basically tells the liver to chill with the natural sugar output (thereby avoiding piling sugar on sugar).

I think symlin has another effect, one that's not documented in the literature. You only take the drug when you are sitting down to a meal of more than 30g CHO. For the first time in a long time, I stopped and thought about what I was going to eat well before I ate it. Though I enjoy the freedom that pumping and carb counting give me, I am ready to revert (for a while at least) back to a more structured approach. I've always been a fan of 'new toys' when it comes to diabetes - anything that will reinvigorate me is of interest, whether it's a new log book or a new treatment approach.

I'm excited (finally) about the prospects of improvement with this drug (and with the addition of synthroid to my arsenal). We'll see what I think when I've taken more than one dose!

I Want a New Car

Dammit! Endo called with bloodwork results and I need to go on synthroid. I was just kidding! I don't actually want new drugs! I was being facetious, or cheeky, or sarcastic (I have a hard time keeping those terms straight). Argh. Of course, as soon as I saw the office name on my caller ID, I *immediately* assumed I was spilling protein, so this is nothing compared to that, right?

So, tonight, I am wishing for a new car. Here's hoping the dealer calls me tomorrow with the good news.

I Want a New Drug

Well, not really. At this morning's endo appointment, when my A1c was revealed as the lousy number I was expecting, my doctor asked me if I'd heard or thought about symlin.

Thanks to my larger-than-life network of friends with diabetes, I have heard of symlin and know a lot about its benefits and potential issues. Several women in an online group to which I belong have been taking symlin for a while. Let me pause here to give a shout out to those awesome people who are willing to try something new, to kick the tires of a new drug or protocol or machine, giving those of us who hang back a little some additional data and real-life first-hand accounts. Huzzah!

I hadn't considered asking for symlin yet, but when I described my challenges and concerns, the doc brought it up. So on the spot, I decided to go for it. Impetuous? Not really, thanks to the aforemented brave circle of diabetes friends.

I will confess that I am waiting until *after* our holiday party this weekend to start. I don't want to risk the nausea that I've heard can occur with symlin when I have 50+ people in my house. But after that, I'll be adding a new drug to my arsenal. I think it will do me good, especially where my troublesome post prandial blood sugars are concerned. If it can reduce my total daily insulin use, it will be worth it. And if the weight loss that accompanies its use plays out for me, I'll be happy as a pig in... well, you get my drift.

So now it's insulin and symlin. Probably in the next year or so, I'll add ACE inhibitors to protect my kidneys. We've also started to watch my cholestorol - still well within range but 'high normal' for a person with diabetes. By the time I hit 40 I'll be on at least 4 maintenance medications. Say a little prayer that I always have health insurance with prescription coverage.

It's a double edged sword, this fatal disease that you can live with.

My apologies to those of you who now have the voice of Huey Lewis stuck in your head.

Writing Exercise 01

This was an exercise prompted by a writing group I recently joined. The task was to take a household object and speak from its perspective.

I am an odd sort of egg shape, as if the top of an egg could be gently flattened without breaking. Bigger and clumsier than your old meter, happily abandoned when opportunity came knocking, tossed aside in favor of me and my no-coding simplicity. Soft blue, mostly, with the requisite grey digital screen. Simple and elegant buttons - only two - for displaying the numbers that alternately mock and congratulate. A delicate swoop of a logo, aspiring to be airy and friendly to take the edge of the sometimes bad news I provide.

I'm sitting here on your desk, wondering if today is one of the days that you are feeling diabetic, or if I'll be ignored. I can't believe the run of luck I've had of late - daily use - four, five, six times a day. Then there was that insane day where you pretended I was a continuous blood glucose monitor and picked me up 20 times, obsessing over which direction your blood sugar was taking and why. Quite frankly, that little exercise wreaked havoc with my nap schedule. I hope the data was worth it.

There you are, bleary eyed first thing in the morning. Tap the keyboard to wake up the PC, crack open a diet coke, reach for me. Don't take this personally, but you look high. I'm guessing over 200. You know, you really should put me by the bed sometime and check those overnight basals. Sorry to nag but you know it's true.

You slide the strip in (that tickles!) and I wake up with a beep. You reach for the lancet device as I blink in ready mode. Change the damn lancet, fool, and it won't take two or three attempts. You lift me up and place the strip against the tiny red drop. The strip takes its delicate sip of blood, and I start my countdown. Fifteen... fourteen... thirteen. You gently bite your lip, looking hopeful. Nine... eight... seven... six. Snap the top back on the bottle of strips and await the verdict. Three... two... one.

278.

Damn, you look crushed. Wait! No! Don't throw me! It's not my fault!

Really, it's not your fault either. I know you went to bed with a blood sugar of 117. What the heck happened?

I'll see you in two hours, we'll try again.

Bragging

This fall, I participated in the JDRF/Boston Walk. Flew up there to walk with the SugarMommas, an online group of women with type 1 diabetes who are also moms. I'm having a nice little giggle tonight because our team t-shirt won the JDRF walk tee contest! How cool is that? Even better, my freakin' awesome sister did the design.

The kids who joined us wore 'beautiful baby of a Sugar Momma' tees, and friends/spouses/families wore 'team Sugar Momma'. We looked awesome, if I do say so myself. Though many people assumed that we were moms of kids with diabetes - forgetting that people with d grow up!

Oh, and we also raised $7300. Now where's my cure?

Not Good Enough

I joined the people-with-diabetes club in '86 when it seemed that an A1c under 10 was great. The tools for management just weren't there, and the DCCT had not yet proven Dr. Joslin was right by quantifying the value of tight control.

Over the past 19 years, so much has happened in the world of diabetes. I've gone from a big old 60 second Accuchek meter that required a hanging drop of blood on a strip that I wiped with a cotton ball to a smart little meter that doesn't even need to be coded with strips that wisk a tiny drop of blood off my finger. Chunky needles and 2 shots of NPH and Regular each day have given way to Continuous Subcutaneous Insulin Infusion. Gone is the system of exchanges that dictated meals. Now, a carb is a carb is a carb... as long as you count it.

You newbies with diabetes have no idea how good you've got it (just as I my diabetes adventures really don't hold a candle to those before me, with their stories of bathroom chemistry sets and needles that needed to be boiled and sharpened).

Technology marches us forward, and there is great reason for big hope, if not for a cure then at least for health and longevity despite this disease. We can - and many do - achieve normal or near-normal blood sugars most of the time.

And I have to say, it's kind of freaking me out.

The discovery of insulin made diabetes the first fatal disease you could live with. And even before insulin became available, living with diabetes was up to the patient. There's a boatload of guilt there, and I think that recent advances have only added to that pressure. Diabetes is unpredictable and irrational. The routine that works like a charm one day is easily thrown off any one of a million variables. But when the A1c comes back high, well, we think, "What am I doing wrong?"

I spend a lot of time on discussion boards that include women with diabetes who want to become pregnant. It breaks my heart to hear some of their struggles to acheive an acceptable A1c before conceiving. The bar has been set so high (or, rather, the A1c goal has been set so low) and there are stories of 'permission to TTC' being withheld by doctors who insist on A1c's below 6 before conception. To make their point, they rattle off the horrors that can result from conceiving before acheiving diabetes perfection. Information which is largely based upon conjecture, as most of the (now somewhat old) research says that an A1c under 8.5 puts you in the same statistical boat as non-d women. To me, who was given the pre-conception goal of under-8 in 1997, it seems overwhelming.

Hanging out on line with the d-elite (motivated, informed, well-cared for people with resources to manage the disease) is a double-edged sword. On the one hand, I am inspired by the stories of control achieved. On the other, I sometimes wonder what the heck I'm doing wrong - and what kind of life I'd have to live - to achieve 'normal'. I don't know whether to laugh or cry when I hear people complain about their horrible A1c's... and they are a full point below my best.

Anyone else feel that they are just not good enough at this diabetes stuff?