A Blogging Birthday.

Tomorrow is my blogaversary.

I am writing this today, however, because tomorrow I’m going to be wandering around Beaver Brook Reservation in Massachusetts with a bunch of the coolest, craziest cats this side of cyberspace. Because I’m one of the 12 people in the world without an iPhone, I’m not able to post on my actual blogaversary.

As most of you know, I’ve been involved in the diabetes community since day one. My family participated in all the JDRF Walks to Cure Diabetes, I went to diabetes camp, I was a Children’s Congress delegate and I’ve been to conferences. I’ve done all the “in real life” stuff that you can do, but there is still something incredibly remarkable about blogging and how much I have seen this change not only my life, but the lives of everyone else involved in this community, whether they are a fellow blogger, a commenter or a lurker.

I’m involved in social media on a daily basis. I read blogs for a living. I see communities formed around everything from music to food to motherhood and everywhere in between. It’s amazing the trusting relationships that can form between complete strangers. The instant communication and the constant support that comes from reading and re-reading blogs, message boards or IMing someone I’ve never met (well, in my case, it’s more like “I’ve only met once”) is incredibly uplifting. I know some people have said that when there is a cure they will stop blogging. I don’t think I’ll ever stop blogging. Sure, I will stop writing about diabetes, but all of you have become a part of my life and have helped me in so many ways. You have been a part of my life, from my West Coast life to my East Coast life, from the good days to the bad days, sharing in my accomplishments and supporting me in my depression.

I wonder if the people who first blazed the blogging trail realize how much they have changed the lives of so many people.

To me, you are not just people with diabetes. You are not just my imaginary internet weirdo friends.

You are my friends, in every sense of the word. I can’t think of a better way to celebrate my three year blogaversary than at the First Annual New England Diabetes Meet-Up.

A Different Kind of Independence Day

Independence Day always brings a bit of mixed emotions for me.

On one hand, it’s a day to reflect on all the accomplishments our country has made in the last two hundred years, from gaining the rights to govern ourselves the way we want to providing legally certain social rights to African Americans and women. I’ve never been the kind of person to think that America is the single greatest country on Earth, but I do think that compared to many societies, we should be grateful for the opportunities we have.

It’s also a day that reminds me of how many things I am still dependent on, from the unavoidable like money and foreign oil to the habitual like greed and approval from others. It also reminds me of one thing that as a community we are all dependent on: insulin. I remember, when I was first diagnosed as a child, that insulin was the main distinction between type 1 and type 2 diabetes. Back then, of course, type 1 and type 2 were not as commonly used. In the books or articles on the disease, it was written as “Juvenile (insulin dependent) diabetes” and “Adult-onset (insulin independent) diabetes.” Now, we all know that while “juvenile” diabetes is and always is insulin dependent (despite the claims of Halle “Weaned” Berry), people with type 2 can also be dependent on insulin because their body simply can’t produce or use their own insulin well enough.

It’s a dependence that I am visually reminded of everyday by my insulin pump (or in my pre-pump years, the insulin pen I toted around everywhere). Although I value my health enough to put up with being tethered to my insulin pump, as well as my glucose meter, there are very few things I want more in life than to be able to get rid of this damn gadget.

On Fourth of July, we take time to celebrate the impact that people made on our country over two centuries ago. This encourages me that the same people who are just living their lives - working, playing, taking care of their families and trying for a better life - can have an impact on today’s world. We can gain independence from pharmaceutical companies and as a result, we will gain independence from insulin.

When that happens, I plan on setting off a few fireworks of my own.

Shifting.

I have been managing diabetes for more than fourteen years. Over time, I’ve learned that taking care of diabetes isn’t usually that hard - the actual act of finger pricks and pressing buttons isn’t a challenge - but juggling of numbers is just excruciatingly frustrating. Numbers are not my friends. I haven’t taken math since my junior year in high school and even then my grades were less than stellar. The fact I have diabetes, which requires a life of numbers, is a cruel joke. My saving grace is the bolus wizard calculator in my insulin pump.

Unsurprisingly perhaps, I don’t enjoy making modifications to my insulin pump. I suffer through days of ridiculous blood sugars and obvious patterns before finally giving in. I don’t know why it takes such effort to make these changes. But once I do, once I raise or lower my basal or bolus ratio a notch, suddenly, everything falls back into place and it’s like I’m a whole new diabetic.

Lately, my life seems to come in sweeping changes. First, new school, new classes and new friends. Then, when that was a done, I did a completely 180-degree turn and went to the other side of the country and into a profession I had absolutely no intention of pursuing. With that came a new city, a new apartment, more new friends and new doctors. Now I’m about to make another huge change by moving into an apartment with a girl I’ve known for two weeks.

Big changes have obviously had a huge impact on my life, both physically and emotionally. I’ve noticed that with diabetes, even small changes can have a huge impact. Whether it’s a half a unit more of basal, a half an hour of exercise, or a few less carbohydrates a day, the results show almost immediately in my blood sugar readings. Suddenly the anxiety from my blood sugar readings dissipates and I’m more relaxed throughout the day. Although the changes need to happen more often than I wish, the positive - or in some cases negative - results are encouraging.

So why is it, despite my obvious willingness to take such risks in uprooting my life, that I am so stubborn in making minor changes in something that has such an immediate positive impact on my health? I don’t know the answer, but I know it needs to change.

Another change. So many changes. Makes me dizzy, sometimes, and I wonder if I’ll fall down from all the shifting.

Word from the Wise.

Tip #982 for Living with Diabetes:

Just because something looks the same does not mean something is the same.

Example: I took out a can of Nestea Iced Tea from the office kitchen’s fridge this morning. I glanced down at the options and grabbed what looked like the same diet iced tea that I had yesterday.

I was wrong. I grabbed a can of regular iced tea. Even when my blood sugar rang in at 320 mg/dl, I didn’t realize the mistake because I figured the high was from my decision to eat Poptarts this morning instead of my usual Fiber One bar. It wasn’t until an hour later when I tested again and landed at 336 mg/dl that I figured something was astray. Upon closer examination of the can, I realized I was drinking out of a can with 33 grams of carbohydrate! I had been working all morning, and drinking from the can without reading the words. Both the diet can I had yesterday and this can are lemon flavored, so I think that masked my ability to taste the sugar. The cans look almost identical - one has a white background, and the other has a light silver background. We have apparently purchased new cans of iced tea with a different design and that is what threw me off. Sodas are usually more obvious. Diet Pepsi is light blue, regular Pepsi is darker. Diet Dr. Pepper is white with maroon, regular Dr. Pepper with just maroon.Check out these misleading labels at Nestea’s website.

Moral of the story: Look before you leap!

The Cheesecake Mystery.

It was a time of celebration, of merriment, of festivity.
The family has gathered
For a high school graduation.

It was a time of killing time.
The location: The Cheesecake Factory, adjacent to the mall.
The time: Saturday night.
So many people, we thought.
65-85 minutes, they said.

Splitting up.
Mother napping in the car,
Brother (and the Boy of Honor) checking out video games,
The Grandmothers chatting on a bench,
The Sister trying on clothes she can’t really afford at The Limited.

Pants won’t fit,
Dress is hopeless,
But alas, two shirts!
Perfect for summer (humidity and all).

Time is almost up!
Quickly zip up jean skirt, adjust top,
Slip on the heels.
Beep! Beep! says the cash register.
With a flick of the wrist,
The receipt is signed
And off we go!

Dinner is filled with laughter and good food.
Salmon and pasta and chicken,
Slices of delicious cheesecake from the Cheesecake Factory and
The biggest Chinese chicken salad you have ever seen.

Buzzzzz buzzzzz buzzzzz, goes the insulin pump
As it dumps in the contents of my reservoir.
Is there a “Select All” feature?

Hours later.

Cards have been read,
Checks have been collected,
Presents have been unwrapped.
Time for a blood sugar check.

5, 4, 3, 2, 1…
520 mg/dl
Gasp!
Shock!
Awe!

“Don’t you sometimes do two tests?” the Brother asks.
Brilliant!
Furiously scrub hands in the sink,
Seeking to remove any sneaky cheesecake molecules.
Pat hands dry and
Take Two:

524 mg/dl.
Blast!
The feeling of utter failure and confusion begin to set in.
Override insulin pump, which suggests bolusing .6 units.
Something tells me: not gonna work.

Gulp down half a can of Diet Ginger Ale.
Trudge upstairs to the bedroom.
Change into pajamas.
Move insulin pump from pocket of jean skirt to
Pocket of hoodie jacket.

Notice trail of tubing down the side of my leg.
I am unplugged.
The dressing room…
Realizations begin to unfold and
The feeling of utter confusion is replaced with
The feeling of utter stupidity.

So, this is to say,
Ladies and gentlemen,
That dressing rooms are a
Very dangerous place.

And, in case you were wondering,
Or just joining us,
I am indeed
And in fact
A PWD.
(person with diabetes, yo)

My First Trip to the First State

Rehoboth Beach is, uh, really far. Although Mapquest told me how far Rehoboth Beach is from where I live in north Jersey, I was absolutely convinced that it was wrong and was closer that it really is. My advice is to always believe Mapquest and to plan accordingly. But even though it’s not that close, the extra fifty miles was completely worth it.

The weather could not have been better. It was sunny, with just a hint of puffy white clouds dotting the sky in the morning before clearing out to solid blue. It was small group of us that congregated in Rehoboth Beach - Heidi from D-Log Cabin, Katie from TuDiabetes and her husband, and Betty, a longtime member of DiabetesTalkfest, and her husband and myself. We met at a cafe just off the main boulevard and chatted about our experiences with diabetes, life on the East Coast and the upcoming diabetes conferences (anyone else going to Friends for Life?). Afterwards, we headed to the beach and strolled up and down the boardwalk, chatting while we checked out stores and stopping at benches to test our blood sugar. We also talked about the reason we were all there: the impact that meeting other people has on our lives and our self-esteem in handling this disease and how important it is to educate others through blogs, social networks and events.

So many people have said how meeting others with diabetes and how seeing people opening test their blood sugar or bolus for lunch changes the way they see their own diabetes. This is why it is so important for me to have these meet-ups or attend diabetes events and encourage people to come too. This summer I’ll either be attending diabetes events or hosting my own and in the next couple of days I will be posting the dates and locations for all of these.

It wasn’t until I started attending diabetes events that I really became passionate about diabetes advocacy and felt motivated to make a difference. For most of my life, I didn’t like talking about diabetes any more than I need to and I didn’t face any discrimination or additional health issues that other people with diabetes face. But being around others with diabetes made me realize that this disease affects us differently and with each new person I meet, I meet another reason to speak up, to educate and to advocate for a cure.

So to Heidi, Katie, Betty and the dozens of other people I have met and will meet: Thank you.

Heidi, me, Katie, Betty and John
(kudos to Katie’s husband Charlie for taking the picture!)

I’m Kind Of Weird…

Well, technically no one picked me to do the Ten Odd Things About Me meme, but a couple people tagged “everyone” so I’m claiming those. Here are some random things you may or may not know about me. I’m also not tagging anyone, because I’m pretty sure everyone’s been tagged by now. But if you haven’t been tagged, feel free to use me as your excuse.

1. I have some odd eating habits. I love to eat kiwis with the skins still on - I like the fuzzyness. I also like to eat the tails of cocktail shrimp. Nice and crunchy. I also have to thank The Parent Trap remake for introducing me to Oreos and peanut butter and I owe my obsession with ketchup and Ranch dressing to my best friend K.

2. I sleep with a sound machine. Between the weird noises my apartment makes and the footsteps and television blaring from the apartments around me, the only way I can fall asleep is with a sound machine to give me something to focus on. I have it set to “rain,” which is a sound I got used to falling asleep to after growing up in rain-soaked Oregon.

3. I really like popcorn. I have a bit of an unusual passion for popcorn. Movie theater popcorn, air-popped popcorn, kettle corn, low-fat. I’ll even eat stale popcorn. I’ll eat pretty much any kind of popcorn, though I’m not a huge fan of white cheddar popcorn, the kind that comes in those air-filled black bags at the check-out counter at grocery stores. You know the ones. They make me ridiculously thirsty and they make my fingers sticky. So I try to avoid it.

4. I’m five foot eight. Apparently this is tall, as I’ve had a few people remark to me how tall I am. I am also, for the record, twenty-two (almost twenty-three!) as several people have also remarked to me how I seem older. I used to think that was really cool, but I think this summer might be the summer when I stop thinking that looking older is cool and start thinking that looking older kinda sucks.

5. I hate having my knees touched. I know that posting this on the Internet is a very, very dangerous thing and I swear to God I have no qualms with kicking you in the balls and screaming if you even pretend to touch them. But this list is supposed to be about weird or unusual things about me, so there you go.

6. I named my first car Buffy. True story. When I bought my car, I thought about naming it because we had christened my dad’s car the Groovy Mobile. My dad suggested naming my car Hal, but I thought naming it after a psychopathic computer that killed the crew might be sending the wrong message. So I went with Buffy, because my mom and I both thought Sarah Michelle Gellar was adorable.

7. I’m a Trekkie. Hardcore. Conventions, dressing up as characters (I was Captain Janeway for Halloween when I was 12 years old) and I even collected autographs. I know a ridiculous amount of Star Trek trivia, bought Star Trek books and went to the opening day showing of Star Trek: First Contact, which I have seen about twenty times.

8. I don’t like shoe-shopping. I’ve never been the kind of girl that has a “thing” for shoes. I find most cute looking shoes to be terribly uncomfortable, and it’s hard to find cute shoes that don’t make me come home with red welts and tears.

9. I took French for six years. I started when I was in seventh grade and went all the way up to my senior year in high school. Despite all that, I speak French very, very poorly. Reading is not too hard, but I’m terrible at speaking. It would probably take me five minutes to pull together a simple phrase.

10. The alternate choice to “Allison” was “Kirsten.” My parents still have the list of possible names for me in my baby book. My middle name, in case anyone is wondering what the “m” in my email address stands for, is Michelle.

The Glass is Half-Full with Lemonade.

First, a big thanks to everyone for your thoughtful, supportive comments yesterday. Whenever I write one of those big, emotional pieces there’s a little part of me that’s always petrified that everyone is going to think I’m an absolute idiot, but thankfully that was not the case! I’m glad that what I wrote helped so many of you and I feel much better having written it. When I first wrote it, I thought I was coming off as being harsh and a little unreasonable. My initial focus was on what Penny said in the comments. That there are plenty of noncompliant diabetics out in the world and that she often has to keep her mouth shut in order to not argue with the many people who say there is no distinction between a compliant and noncompliant diabetic. But, as I wrote in my post, there are people who actually don’t take their insulin or test their blood sugar. My grandfather was one of them. He either had LADA or type 2 (no one knows for sure - he was an adult, but my grandmother said he went on insulin very quickly) but never took care of himself. My grandmother would give him his injections and then he would go off and eat candy bars and cookies. He eventually died from complications.

In my initial drafts, I focused quite a bit on what a noncompliant diabetic is. But I decided I wanted to take the opposite approach - I wanted to focus on what a noncompliant diabetic isn’t. I’m glad to hear it helped give some of you confidence, and I appreciate everyone who read it.

I thought today would be a great day for an encore. You may have seen the Five Pieces of Advice You Won’t Find In A Book meme floating around on a few of the blogs. Well, I think yesterday’s post was a pretty good piece of advice, so that will be my #1.

Here are 4 more things:

RELAX!
This has been the biggest piece of advice I have been giving to parents and the newly diagnosed since I can remember. Often I’ll meet parents who are seriously freaking out and I always wondered, How is this helping anyone? It isn’t helping you, and it certainly isn’t helping your child when your every move is filled with hesitation, sadness and anxiety. This does not help you think clearly - and thinking clearly is a very, very important skill for someone with diabetes. So breathe, step away from the edge, take things as they come, don’t worry about the future, don’t worry about things that are done and can’t be helped. Just do the best that you can and odds are, everything will be fine.

Avoid Auto-Pilot
This is the biggest mistake of veterans with diabetes. They go on auto-pilot. They do the same thing, over and over, day in and day out, without actually realizing that, ohmygod, their insulin amounts have changed! Imagine that… Seriously though, I know it’s not realistic to be spot-on with analyzing trends every single day, but it’s important to sit down with your records (digital or old-fashioned) and just read them. See if you can see anything, and if you can’t, double-check with your doctor or diabetes educator or your spouse/parent/child. They might see something you don’t. The more you avoid auto-pilot, the better your control will be.

Take a Diabetes Vacation
Okay, okay, before you start yelling at me about taking a vacation from a chronic disease which has no cure (uh, yeah, I got the memo), let me tell you that this idea actually originated from Dr. Bill Polonsky, diabetes psychologist extraordinare. The idea behind this isn’t to completely stop your diabetes management for a week, or a few days or even one whole day. The idea is to cut back just enough on your management that you can relax (advice #1) but not die - which is a good thing. To go on a diabetes vacation can go many different ways. When I go on “vacation” I tend to cut out testing my blood sugar a bit more. I might test my blood sugar 3 or 4 times a day, but I’ll take much longer stretches without testing. Another good one is to have your partner or parent do all the carb counting or even have them program your pump entirely (make sure they know what they’re doing first!). Sometimes a diabetes vacation means eating whatever you want without worrying about high blood sugars. I know The Powers That Be would kill me for saying this but a handful of out-of-range blood sugars will neither kill you nor cause permanent damage (Shhh! Don’t tell anyone!). A diabetes vacation, however, should only last about a day before going back to your usual routine.

Ask Questions
If you don’t know why something is happening, ask! You are perfectly well within your right as a human being with a chronic disease to ask questions about it. I mean, you always encourage your children to ask questions in class if they don’t understand something, right? Well, same idea. If you don’t understand why something is happening, how can you or anyone else expect it to change? People with diabetes need to be more vocal not just with each other, but with their medical team. And if your medical team doesn’t give you a satisfactory answer (i.e. an answer that actually makes sense and helps the situation) then you probably need a new medical team.

Also, if you are looking for some helpful suggestions on eating healthy in college, you should check out this new article I wrote for JDRF. It features two great diabetes educators and a handful of kick-ass ladies with diabetes (Sara, Allison, Ashley and Jenny).

The Myth of the Noncompliant Diabetic.

Some people think that an uncontrolled, noncompliant diabetic (said with the deep, dark voice of death) is just a myth that endocrinologists and diabetes educators use to make all of us feel like no-good delinquents who should be serving time in some kind of diabetic corrections facility.

But the truth is it isn’t a myth. Noncompliant diabetics do exist.

A high A1C always strikes fear in the hearts of people with diabetes the world over. Accusations of lapses in testing, not enough record-keeping, too many SWAG boluses and not enough sound nutrition are common among doctors. Have you ever had a doctor ask you, “Why were you 247 mg/dl on October 4?” But even if you do test regularly, take your insulin, try to exercise often, and attempt to count carbohydrates the best you can considering we eat in a society that up until recently prided itself on keeping nutritional content hidden, you can still have crappy blood sugars. It’s a fact of life. We all know that not just insulin and food influence blood sugars. I know this, you know this, and even your doctor knows this (even if he won’t admit it).

We have to move beyond the idea that an uncontrolled and/or noncompliant diabetic is someone who has an A1C outside of recommend levels or forgets to test their blood sugar or eats cupcakes. It isn’t the person who is suffering from neuropathy after thirty-eight years of diabetes, with half their time managing diabetes coming before modern tools like glucose meters, insulin pumps and fancy-schmancy insulins. It isn’t even about being burned out from diabetes, because you can hate diabetes and still manage it. Being burned out can lead to noncompliance and consistently high blood sugars, of course, but plenty of people are tired of diabetes and still do the best that they can.

Not perfection. The perfect diabetic is the myth.

Your results don’t make you noncompliant or uncontrolled. It’s what you do that matters.

The uncontrolled, noncompliant diabetic is someone who knows exactly what they are supposed to do and refuses to do it. The person who looks at the requirements to test blood sugar 4-6 times a day, to count carbohydrates or at least make an educated guess, to wear an insulin pump or keep insulin pens with them and they say, “I’m not going to.”

It is this - the complete forfeiture to manage this frustrating disease - that makes someone a noncompliant diabetic and leads to uncontrolled diabetes. They do exist. But if you are reading this blog, if you are sitting there thinking, “I really want to take care of myself and I am trying to do this the right way” then you are not a noncompliant diabetic. I believe that to control your diabetes means you are controlling your attitude and actions - not your test results.

Sometimes life gets in the way of diabetes and that’s okay. Sometimes you forget to test when you’re on vacation, sometimes you just can’t figure out how many carbs are in your Aunt Carol’s casserole, and sometimes you just can’t help eating the entire bottle of honey during a 3 a.m. low. What matters is that you recognize that it’s going on and you try to fix it. Even if you’re not successful on the first try, or the second try or the nine-hundred and twelfth try. As long as you are trying to do your best, you are doing great.

That’s really all you can ask for.

The Little Games We Play

Yesterday afternoon I hit 100 mg/dl, my first such number in recent memory. I twittered if anyone wanted to give a dollar. But no one did.

I’ve told this story before. When I was a kid, on rare (and we’re talking rare) occasion, I would test my blood sugar and land at the “perfect” 100 mg/dl. It’s just so pretty looking! I mean, in all honestly it’s not any better for my body than a 92 mg/dl or a 104 mg/dl or even a 120 mg/dl, but for some reason, that 100 is like the frickin’ Holy Grail. So my dad was joking around one day and said he’d give me a dollar. You know, 100 cents, 100 mg/dl. Get it? He’s a clever guy. And we just kept up the habit. All the way through high school, whenever I was 100 mg/dl, I would announce, “Dad, you owe me a dollar!” I tried once or twice to convince him to give me two dollars when I was 200 mg/dl, but for some reason that never worked out.

It eventually stopped when I went off to college because, well, he wasn’t exactly going to transfer over $1 into my bank account.

It was these little thing, you know, that made growing up with diabetes a bit easier. Kind of like celebrating my anniversary. And going to the bakery at the hospital with my mom after a doctor’s appointment because we had three whole months to work off whatever damage the donut did to my blood sugars.

It almost made growing up with diabetes… fun. Almost.