Lemonade Life

Wednesday, January 31, 2007

::Slaps Forehead::

Note to self:

When putting new insulin into the insulin pump, remember to EXIT the prime screen before reconnecting.

Going three hours without insulin = NOT GOOD.

Not really one of my finer moments... though personally, I think the pump should have some kind of alarm for "Uh, are you paying attention to what screen you've been at for the last three hours!?"

But that's just me.

Sunday, January 28, 2007

An Anonymous Experience

As most of you know, there has been an anonymous lurker floating around my blog and Scott's blog for the past few days. As lurkers go, this has not be a pleasant experience for anyone, least of all me.

First of all, I want to thank everyone who has left comments supporting me, especially Penny who wrote an entire post on my behalf. I very much appreciate that so many people in the O.C. have my back. Makes me feel all warm and fuzzy inside.

Second, I want everyone to know that the anonymous lurker has been identified. I am not going to release the lurker's name, as I believe it will only serve to cause serious harm to this diabetes community and to damage the lurker's spirit more than it already has. In short, it's just mean.

I have identified and emailed the A.L. and the issues surrounding aforementioned outbursts have been addressed and an apology has been received. To any would-be anony-haters, most blogs on the O.C. have stat counters and we know who you are. Maybe not by name, but we can see where you live, what your IP address is and how often you are showing up. Most of us are not afraid to block you. Thankfully, there will be no more tirades from this particular lurker, though I know there are many people who read the blogs in the Diabetes O.C. and I also know that there will never be a day when we can make everyone happy with our choices.

I can't even do that with my parents and I certainly don't expect to do it with complete strangers.

In case anyone didn't notice, this is my blog. It really is all about me, and occasionally other people.

This is the place where I come to work out whatever issues are going on inside my head. Some of them are inspiring, some of them are entertaining, some of them are downright over dramatic.

This is the place where I come to talk about my experiences, the good, the bad and the ugly. Diabetes, as it has with most everyone reading this, has caused a significant amount of mental, emotional and physical trauma over the years. This is not an easy lifestyle. I have decided to take on the life of an advocate and an educator, but this occasionally complicates things rather than makes them simpler. There are times when I know exactly why I am doing this and I enjoy every minute that I can help people. But there are also times when I am completely burned out, frustrated and dejected. These are the times that I don't know why I do anything.

Coming here and talking about it helps to remind me of why.

I don't want to stand up (actually, I'm sitting down) and act like I'm a superhero or a martyr. No one forced me to do this. While you may have your own thoughts of what I am, I know that I am not perfect and I cannot do everything, no matter what the expectations are.

No one in the Diabetes O.C. is, and that is precisely what makes the O.C. amazing.

We have flaws. We forget to test, we forget to bolus, we forget to refill our reservoirs until the screen blinks No Delivery in the middle of dinner (okay, maybe that one's just me). We eat popcorn late at night, we use regular sugar in our coffee, we eat cupcakes. We don't want a box tethered to our abdomen, we don't want to count carbohydrates, and we don't want to be sick. But most of all, we don't want to be alone. The image that was chosen for the O.C. logo is a bridge. It's a bridge because I believe that these blogs are building bridges from one side of the world to the other, to support and validate the sadness and success of people with diabetes.

Anyone who tells you that you don't deserve to be validated or that you are not worth listening to is wrong.

We may not always agree with what someone does or thinks or says, but whether you are an active member of the Diabetes O.C., a full-time lurker or a first-time guest, you deserve the right to be respected.

If we, as people affected by this disease, can't find compassion for what this life is like, then the foundation of hope is cracked.

Saturday, January 27, 2007


"Thirteen years, huh? Well, this is the longest five years I've ever seen."

That's what my mother told me on Thursday when I reminded her that my thirteenth anniversary was in two days.

I don't remember that much about my life before being diagnosed. I have a few scattered memories here and there, but nothing that really makes a huge delineation between being a "child" and a "child with diabetes." All my memories could have very well happened with diabetes.

When I think about it like that, most of my memories could have essentially happened with or without diabetes. Of course, I wouldn't have gone to Washington D.C. for Children's Congress, or Orlando for the CWD Friends for Life, but I think all the things parents look forward to their children doing, I've done.

Went to prom, got a driver's license, graduated from high school, went to college, made friends, got A's (and some B's and C's for good measure).

I did all the things parents probably don't look forward to their children doing.

Drank alcohol, lied, got a speeding ticket, moved away from home, fought persistently for things that probably didn't matter all that much.

Hopefully, someday in the future, I'll have a job (with health insurance), get married, have a baby, travel the world.

Diabetes makes these things harder, but it doesn't stop me from doing any of them. I suppose that's why people always say "it could be worse." I don't like diabetes and I don't enjoy any of the mental and manual labor, but, as I'm learning in Biology of Cancer, there are diseases out there that could have stopped me a lot earlier in my life.

To me, thirteen years isn't a very long time. Not compared to how long I will have it if we don't find a cure. While new technology and research certainly helps us understand and manipulate the disease more effectively, I know the way I think about living with diabetes is vastly different than it was five years ago, and I'm sure it will be different yet again in another five years.

No matter how I feel about having diabetes, what I hope doesn't change is the fact that I am still collecting the memories I would have without diabetes. Memories of laughter, and love, and excitement. Even if it diabetes shapes them, that's alright. Because when the "five years" are over, I don't want it to look like I was waiting for it to end.

Life comes first, the cure comes second.

And we are very lucky that we can have it in that order.

Friday, January 26, 2007

On the Eve of Thirteen

This time of year is like New Year's for me. A time of reflection on my past, on where I come from and how diabetes has shaped who I am, and a time of anticipation for my future, on where I am going and how diabetes will change me.

Most of the time I don't really think about how diabetes has shaped my personality. My daily existence with diabetes is tied up with finger pricks, infusion sets, carbohydrate counting and figuring out where to put my pump when I get dressed. I don't think about my anger, resentments and frustrations with diabetes, unless I'm struck by a blog post, or a presentation or a memory. I don't try to deny what it's done, it's just not something I typically talk about. My role, as I see it, is to talk about realistically adapting to the challenges of diabetes in order to grow up and be as healthy and happy as possible.

Of course, realistically adapting to diabetes is probably the hardest thing we have to do.

This makes it all the more troubling when I have to talk about it from a personal perspective.

I have control issues. I've known about it for a long time, but I didn't realize until my sophomore year in college what had actually happened.

During my sophomore year, I was depressed. I'm not sure if it was clinical depression or just a "I'm-a-teen-and-everything-sucks" phase. Whatever it was, my life was changing rapidly. Within six months, I had moved twice. My roommate moved out. I was trying to figure out which education path I wanted to take - stay with journalism or move into P.R. I had fallen in love and then had my heart broken by a boy who didn't even want to be friends. I spent weeks trying to integrate myself into a Christian youth group, which ended up threatening to shatter my faith. At the end of this six month period, I had my highest A1C ever, ringing in at 9.2.

On April 17, 2005, for the fourth time in just five months, I cut myself. With my lancet.

When I signed up for therapy the following day, I began the process of figuring out what had happened. In my mind, I wasn't really a cutter. Cutters, I thought, did it all the time. I had only done it six times since my junior year in high school. But I had started smoking as a way to also hurt myself, so I had some masochistic tendancies I needed to stop.

As I talked to my therapist, it became apparent that I had a habit of believing a lot of things were my fault. My roommate moving out was my fault. Not being able to make strong friendships was my fault. The boy breaking my heart was my fault.

I believed, mistakenly, that if I had said something, done something, tried something differently, that things would have worked out and I could have changed the situation.

But most of the time, I didn't even understand what the problem was. And that was the most frustrating fact of all.

When I was diagnosed with diabetes at age 8, and all through childhood and now as an adult, I was instructed to examine my diabetes to find out what happened when things went wrong.

I'm high - did I forget to bolus?

I'm low - did I miscount the carbohydrates?

I'm normal - what did I do differently and how can I repeat it?

It was a constant stream "What did you do?" And I had to figure out what the answer was. Diabetes, in a perfect world, is completely controlled by the patient. I mean, blood sugar is essentially controlled by four things: food, insulin, exercise and stress (well, five if you count the weather). Who controls what you eat, how much insulin you take, and when you exercise? You do. Even if you don't really believe that we are in control of our diabetes, because of all the underlying factors that fuck things up, we've all been taught this.

It's either a horrible truth or an outrageous lie, and I have a feeling it's somewhere in the middle.

When I looked at my life, at age 19, and could see all these ups and downs my life was taking, I couldn't identify what the problem was. Nor could I do anything to bring it back to normal.

There are always ups and downs with life, and then there are times when things are fairly stable and normal. But the problem is, we usually don't have as much say in it as we would like. A normal, stable life happens about as often as a normal, stable blood sugar. People come and go, they say stupid and hurtful things, they are born one day and die another, and they can accomplish the most amazing, heroic and beautiful acts that anyone has even seen.

But the only thing that you can control is you. Everything else is fair game.

I think diabetes gave me a false expectation on my ability to control my life. When something bad happens, when my life goes "out of range," I immediately want to identify the problem and fix it. Now. Give me that syringe, I need to bring this back to normal.

But I can't do that. And on the eve of my thirteenth anniversary, I am still learning how much of my life really, truly is out of my control and how I need to learn to appreciate the spontaneity of it, instead of trying to control it like I try to control my diabetes.

Because, you know, Rock Stars are pretty spontaneous.

Tuesday, January 23, 2007

Skipping Class

I skipped class this morning.

Don't give me that look.

This is week three and this is the first class I've missed! I think that's pretty darn good.

I woke up low this morning. I have no idea how low because I rarely test when I'm low. Trot over to the fridge, grab a juice box, trot back over to bed, and fall in. That's my routine when I wake up low.

I think this proves to Mr. Anonymous in the last post that I am not perfect, thankyouverymuch.

Anyway, I was already late in getting ready for the morning, and I decided since we are allowed one freebie absence that today would be the day. Besides, I hadn't done the reading.

It's hard to feel motivated right now, though I certainly don't want my last term ever to end with a string of Cs.

Last term.

I still cannot wrap my head around that concept.

But here's something slightly easier to conceptualize: I really am coming to the East Coast in March!

I mentioned my impending East Coast Lemonade Life tour back in November but haven't said a peep about it. Mostly because I didn't know if my finals for this term were going to interfere (they're not, for the record, one final on Monday and one on Tuesday - sweet!).

Here are my logistics thus far:

Fly into LaGuardia on Thursday, March 22. Chill at airport hotel because no way in heck am I going any farther than that after 10 hours of traveling to a big city by myself.

Station myself in Norwalk, CT for the weekend. OCapalooza time, baby! Yes, that's right, another OC get-together will take place that weekend. People in the Northeast should have received an email from me (only three people have written back though... makes me nervous). If you want to meet me and other D-peeps, email!

I'll be in New York City from Monday until Thursday - again, if you're in the area, holler!

Then I'll be training it to Philly Thursday night and flying out from PHL on Monday, April 2. My time in Philly is already pretty booked, but if you're in the area and want to give it a shot, shoot me an email and we'll see. Erica, I'm looking at you.


That's the idea at least. The fine-tuning of wherabouts will happen much later, but that's the general premise. It'll be a grand ole time.

Saturday, January 20, 2007

I Make My Friends Famous

First, Ms. Kerri and now...

Ms. Kassie is featured on Diabetes Teen Talk.

If you're nice, I might just interview you. ;-)

Monday, January 15, 2007

Pause Button

I have been kind of neglectful with this place for the past week. The OC New Me Challenge has taken up a bit more of my time than I thought. Of course, there's also that whole "school" business I'm still involved in.

Classes are going well. I'm taking Biology of Cancer, International Journalism, Communication Economics and Dark Self East & West. Biology of Cancer is interesting and I actually saw what an insulin molecule looks like (it was during an overview of protein formation). International Journalism is with one of my favorite professors, but we still haven't done a lot this week. Communication Economics is economics, which means I'm going to hate it, but at least the professor is energetic. Dark Self East & West is a religious studies class focusing on how religions use and justify evil in people. Our first discussions was on Nazis.

I have moved into a nice, completely furnished studio apartment about two miles from campus. I have never lived completely on my own like this before, and it makes me a little nervous but I know plenty of people who live or have lived on their own before, so I know that as long as I'm careful I will be okay. But any suggestions on living alone are of course welcome...

I discovered last week that I might actually be graduating at the end of this term and not next term with everyone else. After my classes this term I will have met all the requirements to graduate. The only reason I was going to stay was because I wanted to finish up my Non-Profit Administration minor. Now, part of me wasn't even sure I wanted to finish the minor because I'm not sure I will ever actually become involved in administrating non-profits. Writing for one, sure, but leading it? I'm not sold. Then I discovered that I might not even be able to finish the term because one of the classes I need isn't being offered.

Well, that settle it, I guess.

There is still a chance that the Projected Courses is incomplete and that they will add that class next term. But part of me wouldn't mind just graduating with my degree in Public Relations and a minor in Religious Studies, because that means I could have a few weeks off before starting a job anywhere.

And before you ask me, let me just say:

"No, I don't know where I am going. I just think I know where I want to be."

It's strange to go so long thinking you know exactly where the finishing line is only to realize that it might be a lot closer. While I'm sure it's nice when you are running marathons, for some reason this just doesn't have the same excitement, the same anticipation. The goal moved and now I'm standing here, at a dead stand-still, thinking, "This is where it was the whole time?"

While part of me is more anxious than ever to be finished with school, to have a break and the move on (literally) with my career, part of me just wants to drag these fleeting moments of childhood a little bit longer. High school was supposed to be the embarking of adulthood, but we all know that isn't true. But the end of college really does start everything.

I want to keep my finger on pause just a little bit longer.

Friday, January 12, 2007

Knock Knock. Who's There? You!

Apparently is National De-Lurking Week in the blogosphere and I only found out about this yesterday.

Man I'm out of the loop.

So if you read this blog and I don't know about it, please introduce yourself. Only has to be a one time thing. Just a little "yo" to know you're out there.

It would make me feel good. :-)

Hopefully people will actually see this post since it looks like my feed on Diabetes Headlines is down. I have no idea how it got deleted but I think it happened around the time I switched to the new Blogger.

::glares in Blogger's general direction::

Wednesday, January 10, 2007

Newest "Living with Diabetes" article

The long-awaited new issue of JDRF's Living with Diabetes newsletter is now online. I contributed an article called "Diabetes Burnout: The 'I Can't Take It Anymore' Syndrome."

Check it out!

Saturday, January 06, 2007

On the Cusp

I'm sorry it's been awhile since I've posted. I recently moved back down to where I go to school, and guess what's not working in my studio apartment?

The Internet.

Of course.

And guess what also is broken: my desk.

And guess what isn't built yet: my armoire.

So basically I haven't unpacked anything except for my toothbrush, toothpaste, shampoo and pajamas.

Hopefully everything will be fixed by tomorrow, but that's basically why I haven't been online much the past couple of days and why some of you who emailed me haven't heard from me.

Tomorrow is the last day to sign up for the OC New Me Challenge, so get at it. We actually have quite a few people who have signed up which really exciting. I also keep getting new prizes which is even cooler. People are just so gosh darn generous. Keep an eye on that website for more details.

I'm currently back at my parent's because my younger brother just turned 17.

Honestly, how does that happen? Wasn't he 12 like yesterday?


It's not that I'm feeling old, it's just I feel like time moves so quickly. But at the same time, with my impending graduation and The Move to Somewhere Else, time also seems to be moving so slowly. So much has happened in recent years that it makes me nostalgic for when I was young and the world was so much smaller. Yet, there is so much going on now, with the website, the Challenge, a new book project I'm working on with a friend. And still there is so much more coming that it makes me anxious for all the new, exciting adventures that I know are just about to happen.

It's like I don't know which place I want to be. I wonder if it ever goes away.

Wednesday, January 03, 2007

OC New Me Update!

I just wanted to let everyone know that parents are now allowed to join the OC New Me Challenge! I know I said before that they weren't, but with some modifications I figured out a way to have parents involved but without co-mingling with the people with diabetes.

If you want more information, visit the OC New Me blog.

If you want to sign up, email me.

Tuesday, January 02, 2007

Year in Review

I did this Year in Review on my other blog (a Livejournal for high school peeps) and I am continuously amazed that memes that my high school friends fill out eventually find its way into the O.C.

Anyway, here is my Year in Review meme, taken from both Lemonade Life and Everything Related.

January: Don't worry, my Fine Blogging Friends, this isn't an "au revoir" post. Me? Get off my Soapbox? Ha ha, never!

February: I love JIMMY STEWART.

March: As you can see, I've moved.

April: I’m home!!!

May: I'm finished with 2 out of four of my projects. Which means it is now Meme Time.

June: Well, I can finally post the big news that I have been waiting since FEBRUARY to tell you all.

July: Having had Type 1 diabetes for 12.5 years, I have had my fair share of endocrinologist appointments.

August: Just in case you haven't been paying attention... 5 more days!

Last Wednesday I was given a trial of DexCom by the Nice Folks at OHSU.

October: 1. Do you still have tonsils? Yes. I plan to keep them there, seeing as how they haven't caused me any issues. If it ain't broke, don't fix.

November: Well, folks. It's up.

December: 1. Congratulations to all the nominees! Very exciting.


Honestly, I don't think these sentences make my life sound very interesting. I think I need to work on more dramatic opening lines.

There was lots of traveling this year, both in Real Life and in the blogosphere with me switching blogs. There was school. There were new developments in my diabetes care (new endocrinologist and the six-day trial of DexCom). And there were O.C. projects with the relaunch of the Official site and the Blog Awards (winners announced on Thursday).

Oh, and I also turned 21.