5 year diaversary: guest post

Hey.

So this is L, here.

“So, what’s the special occasion for this very special guest writer?” you might be wondering. Well, I have been pestering my mom over and over to post this wonderful piece of literature that I have written. So, just for some Neurotic City Tradition, here’s a single paragraph of backstory!!

In the third week or so of school, my English teacher assigned a paper, or personal narrative as he called it, with the topic of ‘something that has changed us’. Obviously, having the ‘beatis is something that has changed almost everything about me, and since my 5-year mark with it was that week that the assignment was due, I decided that it was appropriate to write about the subject.

I don’t know what else to write here, so here’s my writing.

Nearly Dead

When I was nine years old, I almost died – multiple times. And I’m not just talking about
those super scary incidents where you trip over a classroom stool and break your wrist (even though that happened to me), or even that time where you were at Disney Land and the Matterhorn almost started without your seatbelt on (which I also have experience with). I’m talking situations where you have to stay in the hospital for a week because there’s a dead organ floating in your body.

    During the third grade, my parents started to notice some changes in my mood. Because we had a family friend that had a plethora of food sensitivities, she urged us to get a blood test to see if I had any food sensitivities as well. So we got the test done, and when we came back for the follow-up appointment, the results were shocking. It seemed as if I had a sensitivity for almost any food or ingredient you could think of. Gluten? Oh yeah. Corn syrup? Totally. It even showed up that I had a sensitivity to asparagus. I’m pretty sure I only had asparagus a couple of times in my short life, and those few times the symptoms weren’t drastic, even nonexistent. So then I began this dramatic diet that eliminated the culprits of my symptoms. Both my parents and I felt pretty optimistic about this life decision.

    In the summer between third and fourth grade, my symptoms were starting to come back, but even more severe than before. In the last two weeks of summer break, my mom, dad and I traveled to California for a high school reunion for my mom. The number of symptoms increased drastically during the trip, as well as the severity. Not only was I having insane mood swings, I was drinking gallons of water a day, going to the bathroom up in the two digit times a day, and losing lots and lots of weight. One thing led to another, and my mom scheduled a pediatrician appointment three days into my fourth grade career. By five o’ clock of August 28th, 2009, I was admitted into the hospital.

    After being in the ER for a couple of hours, a doctor, Doctor Jon, came in and gave the final diagnosis of Type One Diabetes. A whirlwind of change had just entered my life. There was so much that I found out that night: that no, I won’t die immediately, that I won’t have a shortened life span (or a shortage or limbs) when I’m older (as long as I take care of myself) that I lost 10% of my body weight in three months, and that yes, of course, I could eat anything that I wanted now.

    I don’t remember much of the six-day stay at Children’s Hospital, or the six or so months after the diagnosis, but I do remember some trivial details: the smell of the game room that I visited in between three-hour rounds; the diabetes education game that my least favorite nurse played with me, which had her pull out blood sugar numbers from a hat and have me tell her what I would do in each situation (once she pulled out a 50, in which she exclaimed, “I don’t know why this was in there, you’d be unconscious if you were 50!”, although not even a year later I was very well conscious at 32); and the moment of discovering the magic of Diet Coke.

    Along with the downs of diabetes, there have been so many outstanding ups to counter the downs. I’ve met so many people because of my screwed-up immune system and made so many friendships. All of my outside of school friends I’ve met due to diabetes. My favorite part of summer is a diabetes sleep away camp. And I wouldn’t have had any of those memories or friends if I didn’t have diabetes. So, in a way, I guess you could say that I’m grateful.

Every day, I almost die one way or another – multiple times. But as morbid as it sounds, you get used to it. People always ask me, “How can you do it?” or say, “I could never do that,” regarding one of my finger pricks or pump-site changes. But you get used to it. In the hospital, all of the nurses said that living with diabetes would be a “new normal” and I initially thought that was a lie. Five years later, looking back, I can’t really imagine a life without it. It’s not a new normal anymore, it’s just life.

Here’s to another five years.

 

5 yr dx treat = 100 cho from DQ

back to school

 first day of high school

HIGH SCHOOL!!!

And as is our tradition, we drove her to school on the first day and she picked the music. The only sensible choice for her was the opening song to Heathers: The Musical.  It set the tone quite well for the first day of freshman year. Click below for the tune, but not if you're easily offended. Srsly.

FFL 2013 - a year later

[Precedently: #FFL12 + #FFL11] 

I'm headed down to Florida for the Friends for Life conference this week but I never made a post about last year's experience. It's been too long for me to be able to recap anything in detail, so here's a mini photo album instead, for posterity and whatnot.

Mickey towels welcomed us to our hotel.

 At Sports Central, L meets Elise. "I have a pump."..."I use a pod!"

 

Fast friends.

Bonni and I chat with Joe Solo for a few minutes before he tells us he's having a low.

Katy asks us if we've noticed a particular trash can on the path from the hotel rooms to the conference center that has been the resting place of a towel for several days in a row. On our way back to our room, we spot it for the first time. It remains there until our last day. Godspeed, little towel, wherever you may have gone.

In line for dinner. FFL is a magical place where carbs are clearly labeled on every meal.

During the dinner / dance, I got to hang out with this little nugget. Delicious.

Outside the banquet, this Disney Cast Member was in the hallway with a broom, cleaning up after party-goers. 

She bowed before the young princesses and asked for their autographs. 

She was magical.

 Jojo, me and Bonni.

Dance party shenanigans with Martin, A-Flizzle and Jackie. 

(Not pictured: Crystal Bowersox boogie-ing down in the background.)

The Undercover Princess was back again the next day with bubbles. BUBBLES, I SAY!

Then there was a torrential downpour and our room seemed like miles away.

Because, obviously.

No caption necessary.

Katy and Joe < 3

Goodbyes are hard. 

We stuffed down our sadness by shopping for cheesy souvenirs...

...and driving two hours to get to the beach right before a thunderstorm.

At Epcot, we bought some Miyazaki merch at the Japan shop and the sweet girl behind the counter gave us these handmade creations.

 They were tiny and awesome.

L met her favorite princess. (LOOK AT HER HANDS AND FEET OMG)

You guys. This is one of my favorite things at Magic Kingdom. 

This lady straight freehanded a silhouette portrait with some scissors and black paper. 

I still have one of me from Disneyland circa 1978.

Click to embiggen and see L's eyelashes and braid wispies. Freaking AMAZING.

 We had a chance encounter with the Ugly Stepsisters, who must have the most fun job ever. They just stood there making stank faces and cranky remarks. Wendy and Peter Pan walked by and instead of wishing them the traditional "Magical Day", they shouted out, "HAVE A MEDIOCRE DAY, WENDY!"

 Everyone thought it was hilarious, including Wendy.

A magical end to our vacation.

So that was 2013. This year our local friends will be attending for their first time.  I'm sure they'll come home with as many great memories as we have. I look forward to seeing some familiar faces and hope to make new friends as well. Catch ya on the flippy floppy.

game face

Last weekend my friend Cherie came through town, working on the Ray LaMontagne tour. I planned to see her before the show for a chat and asked if I could bring her anything. She told me that some of the crew and band members had drawn teams for a World Cup pool, just like you and I might do at our jobs. (I can't BELIEVE Karen in accounting drew Germany and I got Greece. COME ON.) Modern Rockers: They're Just Like Us!

Cherie had this idea that it might be fun if I brought some face paint to the venue, so that while the crew was watching the England vs. Italy match before the evening's concert, they could be decked out in proper colors, like sports superfans. Because the only thing better than cheering for your randomly chosen team on the big screen TV in your office is doing it with your face covered in paint.

A couple of hours before we were to meet up, I received a text from Cherie proposing that I not only bring the face paint with me, but actually pose as a local Professional Face Painter, to do these dudes up right. I agreed immediately (WHO WOULDN'T) and within 30 seconds I had already begun formulating my character's backstory. I decided she was the type of person who would wear blue mascara and have a Swatch on her right wrist with the face turned inward, to more easily check the time while working on her clients.  It should be noted that I have never painted anyone's face and rarely wear makeup myself. L thought it would be hilarious if I showed up and acted completely professional and then failed miserably at the task. I thought that would probably happen naturally.

I asked John to come along as the footie expert / face paint assistant. I grabbed a small bag usually filled with diabetes supplies and loaded it instead with tissues, makeup wedges and washi tape. We stopped at Michael's on the way and bought some face paint. When we got to the venue we exchanged giddy hellos with Cherie.  Then we put on our game faces, so that I could...put on a .....game.......face.

The tour manager had drawn England and a member of Ray's band got Italy. There was talk of me painting the Italian flag on the musician's face, but since he had a show to perform in a couple of hours, a crew member made some tiny Italian flags out of gaffer tape instead. The TM, however, was prepared to go full face, so I fell into character immediately.  He had a beard and I said I didn't have any experience with that, as my clients were usually aged 10 and under. I told him I had never painted flags before, as I was more comfortable with butterflies and Batman. I was SELLING IT, people.

Then a funny thing happened. I wasn't a complete disaster!  And since the guy was taking it seriously, so was I.  I wanted to be sure to get the lines of St. George's cross super straight, AS A PROFESSIONAL WOULD DO.  John suggested that I cleanse his face with alcohol wipes to get rid of the natural oils so the washi tape would stick properly. Stroke of genius! 

John and I made small talk with him and the tour photographer who was documenting the whole thing. We joked about how if the TM got super sweaty and the paint started to melt, he would look SO VERY METAL. Since I decided to steer clear of his beard, and there were only two colors, it didn't take very long.  John snapped this pic just as I finished and Cherie came in to check on our progress.  I love the look on her face.

He indulged me when I asked to get a picture with him.

We confessed that Cherie and I were old friends and I wasn't just some rando she found to come paint his face.  Then the match kicked off and a bunch of the crew gathered in his office to watch the game, including the fellas with the Italian flags on their faces. (That's John playing photog below.)

John was thrilled to be able to watch the match with a bunch of lads (including two Scots and an Irishman) who love the sport as much as he does.  Cherie and I sat outside and chatted and laughed at their cheers as they carried through the halls. Sadly, an American wearing the cross of St. John on his face in Ohio wasn't enough to help carry England to victory, and the TM washed it off right after the game. But it was great fun, in a way that only spontaneous adventures can be.

All of which is to say, dear reader: I have A LOT of paint left over (according to the package, enough for 449 more faces) and a newfound enthusiasm for getting paint all up in other peoples' business.  If you're gonna be at the FFL conference in two weeks and plan on attending the July-4th-themed dinner / dance, I know where you can get some amateurish designs painted in red, white and blue on you / your child's face / extremities. Though I think my true talent may lie in recreating your favorite World Cup team's flag using the canvas of your face.

Thanks for being the architect of this particular caper, my friend.

playing with fire

scene from 8th grade science class
no filter / no photoshop

you can definitely do this

I was recently asked to contribute to a new video for the You Can Do This Project. Since I love the project and the crew behind it, I was super flattered and said yes, of course! John graciously agreed to join me, so we got our game faces on and proceeded to record the most awkward video responses of all time. Luckily our advice was pared down to bite-size portions of uncomfortableness and edited in between people who are much more natural in front of a camera. But don't let mine and John's SRS BSNS faces dissuade you from watching, because there are some gems of advice shared by everyone, and it's only 15 minutes long.

To me, the YDCT project is so powerful because it is incredibly comforting to know that you are not the only person dealing with the challenges of living with diabetes. And if my speaking stiffly into a video camera for a few minutes can help someone else down the line, I am happy to be a part of it.

Seriously though, high fives all around to all the parents and teenagers (current, future and past) out there, fighting the good fight. Keep on truckin'.

[For some reason, I'm not able to embed the video on my blog, so you'll have to watch it on YouTube. I know it's April Fool's today, but I promise I'm not RickRolling you.]

And just so there's something of visual interest in this post, here's a pic of my kid and her friend at the first showing of Divergent last month. Because, obviously.

untethered

Toward the end of the soccer season last year, L participated in several weekend-long soccer tournaments. It was very difficult to keep her BG in range due to the extended periods she would have her pump disconnected. Her awesome NP suggested she go on Lantus during the tournaments. This made things much better BG-wise, and L got to experience a mini pump break (though obviously she still used it to deliver insulin for her food).

Perhaps because of this brush with a pump-free life (or not) (I mean I don't know) (she is a teenager after all), L recently decided that she would like to take a break from her pump. She's been using the same one for nearly four years and we've been discussing switching to a t:slim when her warranty expires this spring. So before we pursue that, we're gonna kick it old school for a while.

I vaguely remember how tricky it was to transition from shots to the pump, and I imagine switching in the other direction will present some challenges as well. Have any of y'all gone from pump to shots? Do you have any awesome tips for us? The main thing I was worried about was having to do all those calculations again but lucky for me, they now have an app for that!

[Insert photo of L triumphantly removing her infusion site, for the last time for a while.]

[Unfortunately, I didn't actually snap such a photo.]

[So here is a picture of my cat instead.]

cisco

Yesterday, my family lost a great friend called Cisco. 

"Mommy, take my picture with Cisco! My skirt matches his fur!"

He lived with our dear friends but would come and stay with us a few times a year when they went out of town. 

You could say we had partial custody of him.

He and our cat Thumper didn't start off as the best of friends but eventually they came to an "understanding".

We shared many days and nights together over the years. 

This photo was taken just a few weeks before L's diagnosis.

Halloween

Christmas tree shopping

New Year's Eve, with his mom

He loved his humans but his favorite one in our house was John, of course.

He was so smart and funny and sweet and slightly neurotic, so he fit right in with our family. 

Every time he saw us, it was like we had just returned from war; 

he would get so excited he would make that high happy noise. 

It was a privilege to be loved by him.

He was the best dog I ever knew. 

Thank you to his family for letting us be part of his life. 

We miss him already and we will always love him.