Raising an Eyebrow

Thursday night my older son (8 years old) wet the bed for the first time since toddlerhood. He had fallen asleep that night an hour and a half before his regular bedtime. It made sense; he was exhausted after a busy day, sleeping in a different house where getting up to go downstairs to the bathroom might have been a tad bit too scary. He fell asleep without having a chance to go to the bathroom first, so it's not that odd that he wet the bed.

It all makes sense, right? Perfectly logical.

Try as I might, though, I couldn't squash that nagging little thought in the back of my head... What if? Could it be? Why is he so tired? Why did he wet the bed? Stay calm, stay calm...

He went to the bathroom twice in the space of about an hour that morning. The second time, I looked at my husband and raised an eyebrow.

No, Kass, he's fine. He's healthy and energetic and fine. He inherited your blue eyes and your cautious nature but he did not inherit this. Stay calm.

At dinnertime, my husband pulled out his meter to test (yes, he's T1 too). Casually, I said, "Do you think Jake would test?" My mom, having picked up on the vibe, asked Jake to show her how it's done. He happily complied.

95.

Exhale.

I knew the stats going in, when deciding to have children. I also know there are people out there who think it's irresponsible of a person with diabetes (let alone two people with diabetes) to have children and risk passing on the disease. And even those who don't pass judgement on the decision often ask if our kids have it.

Before starting a family, we did the math and learned that our offspring would have about a 17% chance of getting diabetes. 83% chance of being in the clear. Decent odds, for sure. Neither of us have families where diabetes 'runs'... that, surely, made our odds seem stronger.

I told myself when I got pregnant that if my kids did develop diabetes it would be a whole different disease by then, and possibly even cureable (how odd that I do not dare hope for a cure for myself, yet wish for one against the chance my sons will develop it). Diabetes is certainly different then when I was diagnosed in 1986 and vastly different then it was when my husband developed it in 1968. But it's still diabetes, and because of that I have these occasional moments of panic. If it happens, it happens, and we'll deal with it, no doubt. But I sure hope it never happens.

Leap-Blogging, and How I Got Here

I stumbled into the O.C. by way of an email from my sister. She had come across a post at Diabetes Mine that she thought would be useful to me in my book research. She was right, of course, and I emailed Amy and had a great phone conversation with her about the challenges of being a parent with diabetes.

It was at Diabetes Mine that I discovered Six Until Me, and from there I stumbled upon Herman's Head, and by then I was hooked for sure. I lurked for a while, feeling a little voyeuristic, hazarding the occasional anonymous comment. But sooner or later I knew I'd be on board, and d-Blog day seemed like to right time to dive in, so here I am.

I thought myself very clever when I coined the term "Leap-Blogging" to define this act of following links from one blog to the next. Of course, a quick Google search for that term (176 hits) shows others beat me to it. Regardless, I have had a blast taking off from O.C. blogs to read others. I also enjoy taking guesses at the relationship between the writers - sort of like playing the game where you people watch and make up stories about what the people you see are doing. But that's a post for another day.

My first leap outside the O.C. circle was off of Herman's Head, to visit Anne, who's "Staredown at the Pool" made me laugh out loud, spraying diet coke on my keyboard. I'm not one to read parenting books, but if Anne wrote one (and I hope she does), I'd buy it in spades.

The problem with all this is, of course, the fact that it's sucking time out of my already crazy days! And "I was reading Anne Glamore's take on the PTA" does not qualify as a legitimate answer to my supervisor's question, "Kassie, how's it going with that task list?". So I'm limiting my meandering outside the O.C. to once a week (ha!). Next week, I am *so* getting lost in OCer Martha O'Connor's world!

It's not about the Insulin

I breeze past news reports about inhaled insulin or insulin in pill forms, because, for me, it's not about taking insulin. I think (especially with a pump) the act of taking insulin is the easy part.

I'm not saying that's true for everyone. I know there are many people with type 2 or gestational diabetes who dread the idea of taking shots. And I know that for weeks, maybe even months after diagnosis, I dreaded them. And the thought of an 18 month old needing multiple daily shots... well, let's just say I totally understand when shots are the biggest challenge.

Most days though, I'd personally be happy if all I had to do was take insulin. It's the counting carbs, gathering of supplies (I think my meter/lancet device/strips repel each other - how else can I exlain the fact that they end up in different places?), figuring of doses, frequently failed efforts to squeeze in some exercise, and (of course) the daily doses of guilt that get me.

I don't need an endocrinologist as much as I need a professional organizer and some solid math skills!

I once had an endo say to me "managing diabetes only takes 10 minutes a day." Technically, he was right (he'd counted it up one day, clocking all the steps it took to check blood sugar and take insulin). But as far as understanding the burden of diabetes? I don't think he could have been more wrong.

A Rose by Any Other Name

Generally speaking, I don't use the 'ic' word to refer to myself, or to anyone else who has diabetes. It is a personal policy, and not one I impose on others, so go ahead and use it all you want.

The major exception to my policy has been during pregnancy - when tightly controlling my diabetes was of the utmost importance. Then, and only then, have I considered myself to be a diabetic. Because then I was ALL ABOUT the diabetes.

Having worked for a disability focused organization for over 10 years now, I've become accustomed to using people-first language whenever possible. It makes sense to me, especially after listening to a parent of a child with cystic fibrosis as she recounted the pain of hearing health care staff refer to her child as "a cystic". I also believe that you are what you call yourself: If I call myself by my disease, how can I expect people to see beyond it? Generally, I feel that I give the disease less power if I say 'I have diabetes' instead of 'I am a diabetic'. And to round out my opposition to the ic word, I will forever have the thick Boston accented voice of Paul Madden referring to his wonderful staff and campers as "people who just happen to have diabetes."

On the other hand, I think it is not insignificant that the times during my life when I have had the best control, the best blood sugars, and the most diabetes success are the times when I have labeled myself as diabetic. Perhaps my avoidance of the word is a reflection of denial?

Then there's the debate over pronunciation. Is it dia-be-TEES or dia-be-TUS? I can settle that one with a story from a teacher friend of mine. One day, the vice principal was reading announcements over the PA system. "Don't forget to bring in your donations for the American Die-AH-betees Association". Isn't it nice to know that there's someone in the world who hasn't been affected by diabetes in any way and doesn't know how to pronounce it??

PS, Happy World Diabetes Day everyone!

12/12/05: Additional thoughts...

I don't see this as a raging debate. I think that people in positions of power (ADA, JDRF, etc) and companies that sell to people with diabetes would do well either mix up their terminology or default to the more generic 'people with diabetes'. Individuals, especially those who live with diabetes each day (either as a person with or a parent of a person with) can call themselves whatever they want.

I *do* have a problem with some of the nastiness I perceive that comes out in this debate. Those who prefer to "have diabetes" should understand that it's an individuals perogative to call him or herself a diabetic. Those who are comfortable with or unfazed by being a diabetic should understand that people with diabetes aren't necessarily cow-towing (sp?) to political correctness. Some of us actually gave it some thought and decided, for whatever reason, that we preferred the more 'pc' term. We're not immature or moronic, we're not dumbing down or in denial.

Diabetes is a highly individualized disease. I would never say to another diabetic, "you shouldn't call yourself that, it offends me," just as I would never say "you really should be on a pump". How I refer to my diabetes is a complex issue, and it may be 'affected by emotional baggage' but we all carry some of that, I think. Quite frankly, I don't think anyone should tell me to "get over it."

So please, don't look to me as representing a side in this debate. I'm just a gal musing about what I call myself.

Play DOH

This started out as a rant about play-doh. Ryan (3) has been loving play-doh at day care recently and this week my sister bought him his own set. In eight years of parenting, this is the first set of play-doh that's made it into the house. Play-doh is a hostility gift. If you are a parent and have ever cleaned a carpet, you only give it to kids whose parents you don't like. Have hardwood floors? Then it's an innocent gesture.

Anyway, after a week or so of having it in my house, I'm over the whole cleaning issue. Those of you who've seen my house are probably wondering why it was even an issue to begin with. There are lots of play-doh cleaning tips that address the problem of neon blue clay wrapped around the fibers of a living room carpet. And, remarkably, Ryan (despite his whirling dervish nature) has actually been content to use his playdough at the kitchen table. Even more amazing... after one chunk was left out to harden, he now dutifully cleans it up and seals the containers by himself when he's done! Play-doh Rocks!

And it turns out, I love playing with it. It's so relaxing! Except when the colors get mixed up. What does that say about me?

It hit me like a ton of bricks

On Tuesday, business took me to Shrewsbury, MA, so I decided to tack an hour onto my trip and swing by camp. Clara Barton Camp, to be precise (yes, we Barton girls are everywhere. And damn proud of it.) Last January, Barton wrapped up a multi-year capital campaign, which resulted in the construction of a brand new conference center/year-round program building/medical center. Pretty awesome, to say the least.

Some of the capital campaign money was raised through the sale of bricks and granite benches. As part of the campaign committee, I enthusiastically endorsed the brick idea. Who wouldn't want to leave their mark, permanently, on the Barton landscape? Many alumni, parents, and friends of camp agreed, and there is now a beautiful brick walkway leading to the schwanky new building.

I spent a few moments reading bricks during my visit. Some made me pine for camp friends I haven't thought of in years. Many made me smile. One made me laugh out loud ("Hey You! Get off my brick!") and one stopped me in my tracks.

"Congratulations to those who master diabetes while looking forward to CONQUERING it." -Donna Younger, M.D.

Isn't that what it's all about? Master it, control it, be it's boss, take charge... all while anticipating a cure. Not hoping, wishing, or waiting; but looking forward to the day when balance is restored to our bodies.

Way to go Dr. Younger. I haven't been your patient in almost 10 years, but you still amaze me.

D-Blog Day

It's D-Blog day according to the D.O.C., and since I'm inspired to blog by all of those folks, it seems only appropriate to post about my own D-day, the day I was diagnosed with type 1 diabetes.

After several months of losing energy and losing weight (so dramatically that my mom was convinced I was bulimic. And very good at it.), I had one of those, "there's something terribly wrong here" moments. Shopping with my mother at a local department store, I visited the bathroom twice in the short span we were there. Then, to my horror, I was trying on a dress when the urge to pee returned. I couldn't get out of the dressing room fast enough. Literally. 19 years later I still pity the person who used that dressing room after me.

Since 18 year olds don't normally pee their pants in public, my mom talked to the nurse she worked with, who helped her put it all together, and made me an appointment for the next day. "Don't let her have anything sweet," she told my dad, "It might be diabetes."

I thought it would be a good idea to look diabetes up in a home health reference while we waited to get in to see the doc. As ideas go, that one was not so great. I remember reading about the ravages of diabetes, something about a 30 year life span after diagnosis, and a comment about women with diabetes being discouraged from having children. Cheerful news.

Off to the pediatrician the next day. Peed in a cup which showed large ketones and lots of glucose. Off to the hospital for bloodwork. Waited several hours to find out if I needed to be admitted. Sat in the hospital waiting area with my dad, speculating about whether I would need shots or pills. Ped called the waiting area, told us to go to a nearby pharmacy to pick up prescriptions and return to her office.

The entire drive to the pharmacy I kept thinking - and saying - "as long as it's not shots, I'll be fine". I can't imagine what it must have been like for my dad to have to return to me, waiting in the car, carrying a box of syringes and some vials of insulin.

Back to the ped's office for a quick pep talk and a shot of insulin to get me through the night. Since my high school graduation was only 3 days away, and since my bloodwork was mostly normal (aside from that +500 blood sugar), the docs decided to keep me out of the hospital and set up 2 days of education in the endo's office, with "Rita the teaching nurse".

It was a blur, of course, but one moment with Rita stands out. After showing me how to use my new Accu-chek meter (I was lucky enough to be diagnosed after home meters became widely available), I asked her, "How long do I have to do *that* for?". You can imagine her response.

June 16, 1986. 6/6/86. Yes, I blame the devil.

Things have been pretty good since then, thanks for askin'. I'm still here, struggling like any other PWD, but for the most part enjoying a charmed life. Every day I look for ways to stay on track with the monotonous and unpredictable routine that is life with diabetes. We'll see if and how writing about it on a regular basis helps.