Monday, October 31, 2011

Happy Howl-O-Ween.

My dog wants to say...


I hope you all have a safe and fun night. :)

Friday, October 28, 2011

The Road Gets Easier.

Yesterday was a trip.

Every so often, one of you sends me a totally heartfelt email full of warm fuzzies. These notes tell me that something I did made a difference for you, or that you found a network of support through me. It makes my day to see a comment or a tweet of encouragement, but for someone to take the time (and emotional energy) to write such kind feedback in long form really gets me.

I read those emails over and over. I cherish the ever-living gusto out of those words. They lift my spirit and rejuvenate my creative juices. Those emails remind me that all of us sharing our stories with each other can do some real good in the world. They give me hope.

Yesterday, I got five of those emails.

Five.

I'm just... I don't... what?

Couple that with also receiving "real mail" from one of my favorite people (who also happens to have diabetes), and things just got ridiculous up in here.

Anyway, I'm a bit of an emotional mess over here as a result of this onslaught of positive feedback, and what follows below is a little of how I'm feeling. (Also, thanks for reading this stuff I write/draw. You all have helped me in ways I can never really explain.)

Ahem.

The Road Gets Easier. (A sort-of poem.)

What you do and what you say
Makes a difference. Every day.

We can lift others up; shine a light.
We encourage each other to keep up this fight.

We share what we know, and search out answers.
We give air hugs and make jokes about lancers.

We don't know if we'll live with this forever
But the road gets much easier when traveled together.

So thank you, for being that difference for me.
For shining that light; for helping me see

That while life with this condition can be so very tough
It brought all of you into my life, and for that, I can never be thankful enough.

 

Tuesday, October 25, 2011

Something's Missing.

Notice anything different about my CGM graph?


I made the executive decision (which makes me the CEO of my diabetes, I guess? Related question: do I have to wear a suit?) over the weekend. I'm tired of Jim yelling at me when he's teeter-tottering over that line. (181! 178! 184! 182! 179! 180! And again with the alarms!) I'm annoyed that my keyboard tray goes VRRR! VRRR! like clockwork each morning after breakfast. I'm so over hearing those alarms at the precise moment I'm falling asleep at night.

I'm tired of hearing that stupid high alarm, so I disabled it.

This doesn't mean I've stopped trying, or caring, or checking. This means that I'm exercising my right to use the technology that's working for me, and silence the parts that aren't. Life, and enjoying that life (which is hard to do when I'm being frequently reminded that I screwed up somehow), comes first.

It's not a permanent change, but it's one I'm trying out for a little bit. Because I like keeping some amount of my sanity - and those around me appreciate that, too.

Monday, October 24, 2011

Research Update Event.

I received this in my inbox last week, and I'm very much planning to attend this event. It's not often that JDRF does a research update in the Midwest (actually, I'm not aware that they've ever done one around here before), so this is a pretty rare opportunity. I'm totally geeking out about it.


If you're in the area and plan to attend, let me know! I'm always down for a meet-up. :)  (Also, let's jam-pack this place with people so that JDRF will be encouraged to bring people like Dr. Dutta to this part of the country again!)

Friday, October 21, 2011

DxONE.

Back in March of this year, I got an email from a guy named Dan. He reached out to me as a stay-at-home dad with a teenage son with type 1 who was finding a lot of support online through the blogs (like this one) and Facebook communities he was finding.

He also mentioned that he's a filmmaker and was in the beginning stages of creating a "narrative about type 1". Being a person who is not all that familiar with the movie world, I honestly wasn't quite sure what that meant. He was making a documentary? A short movie? An audio book? Well, okay.

Since that time we've exchanged some emails and I've more fully understood what he's doing, and guys? It's freaking awesome.

The narrative (short film) is called DxONE, and it's an approximately 18-minute peek into the world of a family dealing with a child with type 1, as told through the voices of a father and son. I know that the most cliché reaction to a movie is, "I laughed! I cried!"... but for real, I did. A film made by people who are personally living with the hardships and worries of the story they are telling are bound to hit the right chords.

Dan Masucci is hoping to get, in his words, a "grassroots effort" behind the film so that it can gain as much exposure (and do as much good) as possible. He let me take a sneak peek at an unfinished version of the film earlier this month, and answered some of my questions about the film this week. Here's what he had to say!

Kim: Hi Dan! Thanks for agreeing to answer some questions about your film. What is DxONE about, and what inspired you to tell this story?

Dan: My son Nicholas was diagnosed two and a half years ago with Type 1 Diabetes. Like most of us who have a loved one diagnosed, it came out of nowhere and was really shocking. As a storyteller, I knew almost immediately that I wanted to make a film about it, my first thought was that it would be cathartic. However, I was derailed by the event for nearly two years and even though I attempted to write about the experience, nothing solid came to me.

I don't think I've come to terms with it even now but earlier this year, the time was right to start working on the film in earnest. I believe what really helped me become ready was spending the last two years realizing how little people who don't have Type 1 in their lives know about this terrible disease and how dangerous it can be. I've had people suggest dietary changes for my son and others who told me how holistic remedies could cure it. People have heard of Type 2 Diabetes and think it's the same. I wanted to make a film that would help clear that up.

I know there are a number of books on the topic of Type 1 Diabetes but with a film, a group of viewers can sit down and digest it at the same time. Rather than make a film that was a documentary, I wanted to make a dramatic narrative, and tell a story so it would feel more personal. This film could be about any of us who have Type 1 Diabetes or have a loved one with Type 1.

Kim: I think that is part of why DxONE resonated for me - there were definitely lines in the film that I've either thought myself, or heard from others who care for people with diabetes. How much did your own experience helped you write this film?

Dan: I definitely wrote the script based on my own experiences with having a T1 son. I know that the experience isn't the same for every person so I wanted to touch on as many of the things that I believe are universal to the day to day experiences of families dealing with this. I could quite literally have made a mini-series about the topic but as a no budget indie filmmaker, I knew that I had the cherry pick what I believed was most important to help bring understanding and to make a film that other T1 families could relate to.

Kim: I know you've mentioned that you'd like to see a "grassroots effort" behind the film. What do you hope that DxONE can do for others - with diabetes and without?

Dan: It is my hope that DxONE can be used as a tool to raise awareness, help with fund raising (for appropriate organizations) and most importantly touch viewers. The films that I make tend to be family-themed dramas and my goal is always to get a strong emotional response. I believe that DxONE can do that whether the viewer has T1 in their lives or not. At its heart, the film is about the love that a family shares and that is something everyone can identify with.

I had someone in my own family who told me after Nicholas was diagnosed that "at least it isn't fatal" and I was thunderstruck by that comment. I wanted to be angry. I wanted to yell and tell them that they didn't know what they were talking about. I think there are a lot of people like that, people who don't know how threatening Type 1 Diabetes is. But, I didn't want to focus on the doom and gloom that you can easily fall into. I wanted the message of the film to be about hope.

Kim: I think you accomplished just that. How can people keep up with the film's progress, and what is the expected release date?

Dan: I'm currently in post-production for the film, finishing the edit. People can keep up with the film's progress by staying tuned to the Facebook fan page or at my personal website, http://www.fountainheadpictures.com/

I'm hoping to have the film completed by the end of 2011 or early 2012. In the past I've taken my films on the film festival circuit where they have screened collectively at more than 140 film festivals worldwide. I'd like to do the same with DxONE but I'm not yet sure about what other venues the film will find.

I know that I want to make DxONE accessible to the T1 community but to do that, the film really needs a grassroots movement behind it to help in that effort, so the more fans it gains, the better chance of it getting exposure. I'm hoping that this film is something that can help the T1 community use to get attention for government support as well. Below are some links where fans can follow the film and view video samples, behind the scenes clips and the trailer.

Facebook Fan Page:
http://www.facebook.com/pages/DxONE/170240229692963

------------------------------------------------------------------------------------------------------------

Speaking of video samples, here's a sample scene from the movie:




And lastly, here's a little bit more about Dan:

Dan Masucci lives in New York where he has been a stay-at-home father since his first child’s birth. In 2007, he made it into the top 1% of more than 12,000 directors competing for a place on the Steven Spielberg/FOX Reality show, "On The Lot".

The films Dan has written and directed have collectively had more than 140 film festival screenings worldwide and garnered more than 25 awards. For his short film "Letting Go", Dan was awarded the Idaho Film & Television Institute's IFTI Visionary Award.

Dan has been a "visiting expert" and panel speaker at national film festivals and other media related events. He is currently working on his first novel, a Young Adult thriller titled "Hollowville."


Edit: you may now also find Dan on Twitter (@DanMasucci).

Thursday, October 20, 2011

Pinwheel, Pinwheel, Spinning Around.

What's that saying? You don't know what you've got 'til it makes you run for hibernation and a fistful of Aleve?

I'm new to these "migraine" things. So new, in fact, that I've only ever had one before today and didn't quite have the warning signals down yet.

It started after I had gone for a brief walk outside my office building. My CGM showed a down arrow, which I managed to reroute thanks to a banana and some coffee. I was trying to catch up on some blog reading (specifically, I was trying to read this one) before my break was over, but I was experiencing a very noticeable distortion in my vision. It had a bunch of colors, and it was almost like the way colors "wave" around in a mirage. Except this one was moving in a pinwheel-like manner, and only on one side.

I looked through my pinwheel, and found that I couldn't see my right side worth a darn. For instance, if I was trying to read the page you're reading now, those glimmers of color would have been all over the "Blog Archive" list and anything east of it. But if I moved my eyes right to look directly at that list, I'd be able to see it and not what's to the right. And so on.

I was a little freaked out by it, but since I had been (and might still have been) dropping, I thought maybe it was my body's reaction to a low. A new symptom, but it could be related. Right?

WRONG.

Shortly after, the headache started creeping in like a painful fog, and I got a hint of Eau de Nauseous as well - the two things that had happened the last time I experienced what I could only assume was a migraine. The light sensitivity wasn't as pronounced this time, but I did have to leave work for the day and go crash for a few hours with the blinds shut.

Is this a new thing I'm going to keep having? Am I doing something to cause these? I may not have answers yet, but at least I'm now feeling well enough to start pursuing them.

Do any of you guys get migraines, too? Can you provide any insight for me, other than what I'm finding on the Mayo Clinic website?

Nobody Panic; The Coffee Is Safe.

A small list of things, because that's how I'm rolling today:
  • Blog stats tell me that the search term "pictures of awesome" frequently brings people here. I do post a lot of Billy pictures (and may have tried to put glasses on him last night to see what would happen - he wasn't okay with it), so I guess that makes sense.
  • The building I work in is going to be experiencing some construction for the next two months - actually, it will all be happening on my floor, specifically. They're building a wall and a new door (with a swipey badge thing - technical terms, people) to close off my area, but this also means that we won't be able to access our break room for that time. My first thought upon hearing this might have been, "But how will I get to the coffeemaker???" Rest assured - they're relocating that, too. We're safe.
  • In pancreas-related news, I saw my doctor again last week. I didn't realize we were checking my A1C until she told me what the result was. Although it's higher than I want it to be (7.1), it is unchanged from last time - and I'm counting that as a good thing. I can be okay with consistency. Onward!
  • I can't believe I'm thinking about Christmas already. WHAT.
I also saw something on Twitter about diabetes flash mobs? Color me intrigued. And blue. ;)

Tuesday, October 18, 2011

Wear Blue.

November is a huge month for diabetes advocacy, what with American Diabetes Month and World Diabetes Day happening concurrently.

And speaking of World Diabetes Day - which is November 14th - there's a cool initiative being spearheaded by my friend Cherise to raise awareness for WDD and the global diabetes community at large. (And I was honored when she asked me to help her organize the event this year! We put together the video below, where you'll see some familiar and maybe not-as-familiar faces from around the diabetes community.)

It's called Blue Fridays, and it couldn't be easier to participate: just wear blue on every Friday in November. There is also a Facebook page where you can upload pictures of you, your family and friends wearing blue every Friday next month. (I also hear that there might be some giveaways for people who upload photos...)

I'll be wearing every bit of blue I have next month, in the hopes that it sparks some conversation and questions.

There are lots of reasons to wear blue - what's yours?


Monday, October 17, 2011

DIABETES TALKING IN ALL CAPS.

(FYI: this post will make a whole lot more sense if you're already familiar with this site; specifically entries like this one, this one and this one.)


SOMETIMES I LIE AWAKE AT NIGHT AND WONDER WHY MY PANCREAS JUST COMPLETELY STOPPED WORKING. I MEAN, WTH, RIGHT? I SHOULD DONATE IT TO SCIENCE. IT'S ABOUT AS USELESS AS LEARNING THE METRIC SYSTEM.

NANCY, YOUR WHOLE PANCREAS DIDN'T BREAK. JUST THE PART THAT MAKES INSULIN. ALSO, LEARNING THE METRIC SYSTEM IS KIND OF IMPORTANT. THE WHOLE REST OF THE WORLD USES IT.

 I WILL LEARN THE METRIC SYSTEM WHEN THEY FIGURE OUT HOW TO TURN MY BETA CELLS BACK FROM ZOMBIES INTO WORKING PARTS OF MY BODY, LUCILLE.

NO ONE SAID YOUR PANCREAS HAD ZOMBIES IN IT.

IT COULD, LUCILLE. YOU DON'T KNOW.

ACTUALLY, I DO. I'M A DOCTOR.

YOUR MOM IS A DOCTOR.

SIGH.



THE INSTRUCTION MANUAL SHOWED THE MODELS HOLDING THE PUMPS LIKE THIS WITH ONLY THEIR THUMBS AND INDEX FINGERS, SO THAT'S HOW I'VE BEEN HOLDING IT FOR THE PAST THREE YEARS.

WAIT, WHAT? NO! THAT'S JUST HOW THEY DISPLAY IT.

NO, THAT CAN'T BE RIGHT. RICKY WOULD HAVE TOLD ME THAT I DON'T HAVE TO DO THIS.

MAYBE RICKY DIDN'T TELL YOU ON PURPOSE. MAYBE RICKY STILL REMEMBERS THAT DAY IN THIRD GRADE WHEN YOU WOULDN'T SHARE YOUR SECOND HAM AND PROVOLONE SANDWICH WITH HIM ON THE DAY HIS MOM FORGOT TO PACK HIM A LUNCH. MAYBE HE NEVER LET IT GO.

THAT DOESN'T SOUND RIGHT. RICKY LOVES ME.

MAYBE HE JUST WANTED TO RECORD YOUR REACTION AND PUT IT ON YOUTUBE SO THAT HE COULD FINALLY GET ON TOSH.0.

I WILL CUT RICKY.



I JUST DON'T UNDERSTAND WHY EVERY FEMALE CELEBRITY WANTS TO WEAR THESE THINGS CALLED BANDAGE DRESSES LATELY, YOU KNOW? 

I MEAN, COULDN'T THEY NAME IT SOMETHING THAT DOESN'T REMIND ME OF DIABETES? IT'S LIKE, I'M WATCHING THE OSCARS AND ENJOYING MY NICE GLASS OF RIESLING AND GIULIANA RANCIC COMES ON AND ASKS THEM WHO THEY'RE WEARING, AND I ALMOST DO A SPIT TAKE BECAUSE I THINK THEY'RE TALKING ABOUT TEGADERM.




STOP POKING ME WITH WORDS AND JUST GET ME A FREAKING JUICE BOX.

Friday, October 14, 2011

Things I've Learned In The Past Week.

The name plate of a medical ID bracelet can make an excellent stand-in for the nickel you don't have when it comes time to change your insulin pump battery.



The DOC now has its own gang symbol. Don't know what it means? Hashtag it.

Sometimes people are brought into our lives - even if only on a brief plane ride - for a reason. It's up to us to make the most of the opportunity.

I was once again reminded of how full of good people this community is, and how welcomed, loved and appreciated we can make each other feel.

I learned that if a small army of people walk into a hospital all wearing the same t-shirt, you're going to get quite a reaction from the male nurse who watches you all walk by.

Four and a half minutes of video can make me laugh and cry and miss my "tour buddies" so, so much.


And I've learned that Billy would totally stick his face in a New-tell-uh jar if I would only let him.




Tuesday, October 11, 2011

Simonpalooza: Simon's Arrival.

Friday night was spent at Jess and her husband's house with snacks, cupcakes, a live Twitter feed of our weekend's hashtag on their TV (how nerdy are we?) and the creation of some welcome posters.

image credit (for all in this post): Sara
T-shirts were distributed and we made plans to greet Simon at the airport.

Have we mentioned that he thought just one person was coming to pick him up?

All twenty-something of us gathered at his gate, and tried to wait patiently. Our group attracted a bit of attention from both the TSA ("....Wow.") and fellow passengers. One gentleman that deplaned early saw our group and asked, "Are you all waiting for the Australian guy?" *cue affirmative squealing* "Oh, he's a GREAT guy. I sat next to him on the plane and heard his whole story. You're really going to like him. He's great."

It seemed like we waited hours, but it really was only minutes. We decided that he must have been the "nice guy" that was letting everyone else get off of the plane ahead of him. :)

And when he finally was within view... well... you need to see it for yourself, I think. Allison at DiabetesMine put together a video explaining what "Simonpalooza" was all about, and got Simon's arrival on film. The look on Simon's face when it registered that the big mob of people was for HIM... well, that one moment would have made the whole trip worth it.

It isn't that Simon is some sort of celebrity (though he most certainly is in our eyes), though the spectators at the airport probaby believed he was. (They also believed that Sara's marriage proposal sign was the real deal, until we told them it wasn't. Ha!) It's more that we all knew the sacrifice he'd made to come to the U.S. and what it meant to him. And what's even better is that it meant that to us, too. We lift each other up in this community; we cheer each other on; we share the weight of our difficulties and challenges. (Related: Simon is so fearlessly honest that I think his words took a few of us by surprise. Case in point: Simon telling Cherise what she and her work have meant to him. Sara caught part of that moment and posted a video today - it's very worth the watch.)

That undercurrent of understanding we all share amplified the emotion of the moments we had.

As Jess described in her vlog today: We're all with the band.



Monday, October 10, 2011

Simonpalooza: What You Do Matters.

I just got back from a large meet-up of wonderful DOC folks, which you may have seen on Twitter as "Simonpalooza". (Named because our friend Simon, who is from Australia, flew here for the specific purpose of meeting as many of his diabetes online community friends as he could - who we now just refer to as "friends".) I'll be recapping some of my favorite memories from the weekend over the next few days, and what the experience meant to so many of us.

It meant that around 30 of us (type 1, type 2, LADA, and our loved ones) made the trek to Kansas City to spend a couple of days with people we love (and prove to each other that we are real, actual people).

It meant that we all seemed to feel very okay about being stared at for things like pump tubing flapping in the breeze and matching t-shirts that no one else understood, because we understood it.

There we went, walking down the street. And we totally did get
the funniest looks from everyone we met.
It meant that each time someone asked about those t-shirts, our story became a little bit less about telling the truth and little more about fanning the flames of Blünt Lancet folklore.

The relatively short trip for us (less than five hours' drive) meant that Aaron finally got to meet some of the people I talk about all the time. (And they found out that he's a real person!)

It meant that we got to see, hear, and bear hug the people who so often can put words and hashtags to what we're feeling in our own lives - with diabetes and without.

It meant that I heard Simon's story straight from the man himself, and the memory of our conversation is something that I will remember and cherish always.

It meant that I cried. A whole lot.

It seems that things happen for a reason - the people you meet, the places you end up, the things you do. To borrow a phrase from someone wiser than I am, it's nearly impossible to connect the dots while looking forward - it's only when you look back on life that you can see the clear connections between decisions, circumstances and situations.

Sometimes you share your life with others (whether it is blogging, Twitter, online forums, whatever) and have no way to know if what you're doing is helping anyone. You share your experiences in the hopes that what you've been through resonates with someone; that maybe hearing your story will bring them some small amount of comfort. You hope that you can spark just a little glimmer of the thought, "I'm not alone after all".

This weekend provided multiple opportunities for folks to tell each other, face to face, that what they do matters - because they themselves were impacted by it. It's hard to wrap your head around the kind of impact simply know someone who is living and struggling and triumphing over the same thing that you are can have, but this weekend I had a chance to witness that very emotion in person.

It was beautiful, and I'm so thankful to know so many wonderful people. What you do matters - so please, keep doing it.




The video above was created by Sara, who so thoughtfully brought a video camera and wrangled us together to get these clips recorded. Please check in with her blog in the coming days to see the photos and videos she took of the weekend. There were a lot of great "moments" that she caught on film. :)

In order of video appearance (and who they are on Twitter):

Babs @babssoup
Jon @kssoup
Bob @rpederse
Cherise @Diabetic_Iz_Me
Nina (Cherise's mom)
Sara @saraknic
Jeff @jeffmather
Lisa (Jeff's wife)
Sarah Jane @SaJaBetes
Allison @AMBlass
Eric (Allison's husband)
Jess @jessmeandd
Josh @TypeBoring
Victoria @victoriacumbow
Melissa @sweetlyvoiced
Heather (and Becca!!) @auntlyh
Courtney @iamsquee
Kim @txtngmypancreas
Aaron (Kim's husband)
Mike @MHoskins2179
Scott J. @scottkjohnson
Kelly @kellyrawlings
Scott S. @Strangely_T1
Simon @STroyCrow

Friday, October 7, 2011

No D Day: Movies.



It's once again "No D Day", and I had a hard time coming up with something. I feel like I share a lot of non-diabetes related things already: my affection for coffee and Corgis; my gracefulness and my varied musical taste; which health appointments I actually enjoy and what I do when I'm not social media-ing.

So, here's what I've got: I'm That Girl Who Hasn't Seen That Movie.

There are a whole slew of them; those movies that "everyone has seen". I know this because I can't tell you how many times this has happened:

[insert witty and appropriately-timed movie reference made by friend or acquaintance here]
[imagine me giving said friend or acquaintance a "deer in headlights" look]
Friend: "...it's from [insert name of movie here]?"
Me: "Oh, I've never seen it."
Friend: "OH MY GOD, WHAT!? YOU HAVE NEVER SEEN [insert name of movie here]???"

I don't know, you guys. I don't know how I haven't seen it. I just haven't, and I probably won't at any point in the future, either. I don't watch a lot of movies in the first place, and new ones just keep getting released, you know? I can never really catch up.

So, in an effort to help you avoid the awkward conversation above if we ever meet, here's a brief list of the most frequently referenced movies that I'll have no clue you're referencing.

  1. The Shawshank Redemption
  2. The Godfather (any)
  3. Scarface
  4. Schindler's List
  5. Goodfellas
  6. Apocalypse Now
  7. Citizen Kane
  8. Saving Private Ryan
  9. The Green Mile
  10. Raging Bull
  11. Platoon
  12. Stand By Me
  13. A Streetcar Named Desire
  14. Rosemary's Baby
  15. A Beautiful Mind
  16. Any of the Harry Potter movies (haven't read the books, either)
  17. Any of the "Planet of the Apes" movies
  18. Any of the Beverly Hills Cop movies
  19. Any of the Die Hard movies
  20. The Graduate
  21. Breakfast at Tiffany's
  22. The Notebook
  23. Footloose (although I have seen it in its musical theatre version - counts?)
  24. Brokeback Mountain
  25. Any movie involving Marilyn Monroe, Elvis Presley, James Dean, and just about any top actor of the 1940's

Thursday, October 6, 2011

Guest Post: I Get By With (Or Without Real Life) Help From My Friends.

I'm pleased to bring you a post today from fellow diabetes blogger and #sweatbetes extraordinaire Maria. (She's also studying to be a biomedical engineer, which means she is WHOA smart and totally a badass, in my eyes.) I think many of us can relate to the philosophy that sometimes humor is just as important a part of our diabetes management as insulin and glucose meters are, and how important it is to have people in our lives that "get it". Thank you for sharing your words here today, Maria!
 ____________________________________________________________________

"Who doesn't have ticklish feet?" -Classmate

"I'm ticklish, just not on my feet." -Roommate after I try to tickle her feet

"Diabetics?… But seriously, I just learned how to resist the urge to laugh." -Me

Best comeback ever. At least that's what my friends were giving me props for (because Biomedical Engineers hear about diabetes at least once in almost every class [or so I feel, but maybe a lil exaggeration]). Moments like these make me laugh when I consider that I've been somewhat Missing In Action on the front line of my diabetes care for about 10-12 years.

I'm a lucky person with diabetes, who managed to somehow survive her tumultuous teen and crazy college years with a little luck, little to no D-inspiration/care, and no signs of complications (yet [Thanks Body for functioning sometimes!]). For the longest time, I pushed myself to do a million things (that hasn't really stopped) without really paying attention to my closest companions, my irreverent pancreas and her silly tagalong Diabetes. High school and undergrad was definitely difficult to bring along this extra piece of luggage. I'd check my blood sugar once in a blue moon. I'd try and remember to bolus before I ate (which happened exactly once, I think). Even as a master's student, I tried to shove diabetes into my backpack and never pull it out (along with that fairly old granola bar and less old juice boxes for "emergencies").

What changed? I started reading a blog about living with diabetes one day. And then another. And then another. Until I was fully bitten by the Diabetes Online Community (DOC) lurking bug (and oh my, is it ever infectious). Some light switch went on that said, if they can do it, I can too (before the You Can Do This Project).

After spending nearly 14 years in a PWD free bubble, the light bulb went off. Things started to click. My HbA1c came down. My bringing up of diabetes in normal conversation went from non existent to all over the radar.

My best friend in high school actually sat me down to ask about my health because he finally saw the glucocoaster I ride through my tweets. While he remembers my teachers in high school scolding my eating habits in class, he never thought it was a big deal because I never really flaunted it around. My parents asked more often on the phone about my diabetes after I moved back in with them for a few months this summer. While my mom worries (about everything from my eating habits to my car and to my wardrobe occasionally), she had slowly let diabetes fall off her radar because I never discussed it. I never made a point of saying, "I'm testing" or "I need to wait for this low to come up before I can eat." While she still doesn't quite grasp that there's no such thing as perfect with it, she sees it more now and asks on the phone about my good friend, diabetes. Things are drastically different now.

I've only been living with my roomies for a few weeks now, but they already know that I talk to my diabetes (and my diabetic devices) all day long. They know, almost as well as I do, that my Dexcom lies sometimes. We sat down at dinner and just after my third bite of food, my continuous glucose buzzed about being low. Before I looked at it or opened my mouth, my roommate said, "Shhh! She's eating!"

Sometimes, I'll show them my graphs and they'll tell me what they see. Today's response? "It looks like your diabetes is giving you the finger. You need to get that pancreas of yours a stern talking to."

If laughter is the best medicine (which is definitely what I bet on in real life or online life), my friends give me no shortage of good medicine.

__________________________________________________________________

Here's a little bit more about Maria:

Maria Qadri is in her first year of doctoral studies in Biomedical Engineering, after completing a Masters and Bachelors of Science in Biomedical Engineering as well. As a determined young woman, she has a deep love of adventures (ultimate frisbee, indoor & outdoor rock climbing, delicious flour disasters) as well as jumping up and down for great causes (UNite for a Healthy Future / Juvenile Diabetes Research Foundation / Engineers Without Borders). Her diabetes is a high school freshman at 14.5 years old and enacts all the (in)appropriate blood sugar (and subsequent mood) swings. She loves the driving around the northeast and volunteering to help with almost anything (minus laundry)! Check her blog out at Climbing Diabetes or on Twitter!

Wednesday, October 5, 2011

Wordless Wednesday: Happy.


It seems that I can't stop posting pictures of my dog here. I'm sorry. I just.... I can't... I mean, LOOK AT HIS FACE. You can't say "no".

Tuesday, October 4, 2011

There Is No Spoon.




I'm not sure where it began.

It probably wasn't a singular moment or comment that began that ever-growing snowball. It likely was all of those little things, laid one by one on top of another; melting into a suffocating landslide of guilt and shame.

Probably, it was the college years when my A1C started climbing and I felt as though I was doing all I was able and willing to do at the time - but it was never anywhere close to good enough.

It could have been the many, many times where an endocrinologist visit ended in tears, because my answers were never the sort that could pass their test. It could have been the dread of those appointments eventually causing the pre-appointment build-up of dread, anxiety and just plain fear. (And then, beating myself up over canceling the appointment.)

It could have resulted from not getting to hear the experiences of other real-life patients - of not knowing one single soul on that college campus who also had type 1 diabetes. I didn't know anyone else there who was living this same routine of shoddy math, bodily defiance and food distortion that I was.

It could have been my almost certain belief that one day, because I could never "get it right", I'd inevitably lose my eyesight. Or kidneys. Or toes. Take your pick.

It could have been realizing that "good enough" might not actually be.

It was seeing the impossibly low goals that my doctor had for me, and wondering, "How on earth do people do this? How do they do this, and still live a life? How can they enjoy that life, when all they're apparently thinking and worrying about is what diabetes is doing to them?"

It was being absolutely convinced that every single other diabetic in the entire universe must have this figured out, except for me.

I was convinced that I was the only screw-up. The way my doctors reacted to my self-care only reinforced that belief - because the only reason they'd be so shocked and disappointed would be because I was their worst patient, right? Because everyone else was achieving these kinds of numbers? Isn't that what was happening?

It was partly because questions were phrased, "Why are you still high in the mornings?", and "You are low way too often; what are you doing to cause that?", and "Why didn't you do what I told you to?".

It was beating myself up over my failures, then resigning myself to futility.

It had never occurred to me that a "perfect" diabetic wasn't actually a real thing. My past experience had shown that the medical world (which was all I had at the time, as this was B.D.O.C.) tended to make it very clear that there is an acceptable range, and it's [here]. And if you can't get yourself there, it is because you aren't trying hard enough; you aren't disciplined enough; you aren't following their guidelines as you should be. The focus of blame tends to be on the patient's ability to self-manage, not on the disease itself.

It's one of the greatest gifts that bonding with this community has given me. Though it took a while for this to really sink into the parts of my brain and heart that can truly believe something, I think I can finally start to believe that there is no "perfect". There is "try your best"; there is "learn from your mistakes"; and there is "never give up". There will be questions without answers. There will be numbers without logic.

There is no productive benefit to berating myself. There is no positive benefit to my health when I internalize what I perceive to be "failure".

I can choose to let the outcomes of my diabetes decisions define who I am and how I live my life, or I can choose to accept the reality that the only parts I can consistently control are how I feel and how I react.

I have begun to accept that there is no spoon.


Monday, October 3, 2011

Giant Chew Toy, It Is Not.

Bullet points are my friends.
  • There's nothing quite like getting a haircut and blowdry at a salon to make me feel like I'm living in a hair commercial. I might have indulgently (and obnoxiously?) swung my hair around just a wee bit at the grocery store before I headed home on Saturday.
  • The diabetes gods will always ensure that no matter where I put a new infusion site, Aaron will snag it while hugging me. And that I will reflexively respond, "It's okay!!", while trying to mask the wincing.
  • The JDRF had a live webcast last week on glucose-responsive (or "smart", as it's otherwise known) insulin - if you missed it, you can watch the archived version here.
  • Several awesome people with diabetes will be convening this coming weekend in Kansas City (there's a NYC meet-up, too), and I am beyond excited to see everyone - and meet some face-to-face for the first time! Also, I will get to prove that my husband is a real person, as this is only the second DOC meetup he's been able to attend with me. ;)  I'll be tweeting as much as I can remember to over the weekend. (Sometimes it's hard to remember - I'd rather live the moment and talk about it later, you know?)
  • Billy - your brand new dog bed is not a giant chew toy. STOP IT. (P.S. Thanks for the snuggles this morning; you make Mondays just that much more bearable. Or dogable. You're not a bear. Whatever.)