Wednesday, April 22, 2015

#IWishPeopleKnewThatDiabetes Day

Thanks to Kelly at Diabetesaliciousness who came up with the idea for that hashtag up there. You can read about the inspiration in her blog post here. People all over the DOC are chiming in with their own experiences. Here's my contribution:

I wish people knew that diabetes...

- requires my kid to inject himself with a synthetic hormone regularly for the rest of his life
 
- comes with a shortened life expectancy and higher incidence of depression than the general population

- may cause my son to face discrimination from future employers

- is often misunderstood by people who do not have direct experience with it (including myself before my kid's diagnosis), which can be very damaging to those who live with it

 
- is frequently misrepresented and used as a punch line in pop culture, creating and reinforcing widespread myths and misconceptions

All of which sucks a lot. But I also wish people knew that diabetes:

- gets my kid into a summer camp where he can bond with other teens in the same boat as him
 
- has inspired active online communities filled with advocates speaking out and coming together for the cause

- is responsible for many friendships I may never have made without it in our lives

- has solidified my existing friendships, as people reach out to us to see how they can support our family

And guess what. Every single thing I listed above? Those are also things I wish people knew that transgender people have to deal with.





BOOM.

Let me be clear.

I am NOT saying that being transgender is a disease that needs to be cured.

I am saying that both diabetes and gender dysphoria are lifelong conditions that are greatly misunderstood by the general public. And by raising my voice, about both issues, I hope I can raise the visibility and remove some of the stigma surrounding them.

Check out my other blog for more musings on trans issues.

Tuesday, March 31, 2015

big news

[Apologies for the multiple posts to those who follow me on other social media platforms.]

In honor of International Transgender Day of Visibility, I have an announcement to make.


SURPRISE! IT'S A BOY!

 
Due to this new development in our lives, I've started a new bloggy blog.
 I'll probably be posting over there quite a bit more often than in these parts.
At least for now.
So come on over, if you're interested.
 

Wednesday, March 18, 2015

meme x 4 vol. 2

[E was inspired to complete this meme as well, yay! - shannon]

1. Four names people call me other than my real name

[last name]
A slightly obscure nickname that starts with an 'L'
"get to class"
some sort of mispronunciation of my actual name


2. Four Jobs I’ve Had

N/A

 

3. Four Movies I’ve Watched More Than Once

Little Miss Sunshine
Captain America: The Winter Soldier
Matilda
literally any Studio Ghibli movie

 
4. Four Books I’d Recommend 

It's Kind of a Funny Story - Ned Vizzini
all of the Harry Potter books - J.K. Rowling
The Curious Incident of the Dog in the Nighttime - Mark Haddon
Wonder - R.J. Palacio



5. Four Places I’ve Lived 

N/A


6. Four Places I’ve Visited

Nederlander Theater, NYC
Crystal Ballroom, Orlando
Alpine Tower, Ohio
Holiday World, Indiana
 

7. Four Things I Prefer Not To Eat 

the meatloaf at my school
walnuts
pie
apple flavored juicy juice

 

8. Four of My Favorite Foods

popcorn
the cookies at my school
pizza rolls
garlic bread

 

9. Four TV Shows I Watch

The Office
The 100
Dance Moms
Avatar: The Last Airbender

 

10. Four Things I’m Looking Forward To This Year

diabetes sleep-away camp
ugly xmas sweaters
band class next year
telling more bad puns


11. Four Things I Am Always Saying

Any line or lyric from the musical Newsies
"Yes mom, I bolused"
"Did we have any English homework?"
"We don't have a science lab today, do we?"

Tuesday, March 10, 2015

#dblogcheck

As you can tell from the tumbleweeds blowing through this blog, it's been years since I've updated with any regularity. But I found myself wanting to participate in #dblogcheck today. So I found a story I wrote almost 5 years ago, but never shared here. I'm posting it below with minor edits.
===================================================================

10 June 2010

Yesterday I was hanging out in L's room while she put some of her artwork from the past school year on her walls. I was lying on her bed and she was hopping from subject to subject as only a kid recently released on summer vacation can do. I can't even remember how the topic came up. Maybe it was a complete non sequitur. She said, lightly, and with no angst whatsoever, "I think if I decide to have kids, I'm going to adopt."

I was surprised because she doesn't have any friends who are adopted, and I can't recall any books or movies she might have read or seen recently that touched on that topic. I said, "That's really cool. You know, people have different reasons for adopting." She said, "Like what?" and I said, "Well, some people's bodies aren't able to carry a baby; other people feel like there are enough kids in the world who need a family and they want to help those kids out, stuff like that." She paused and said, (still very casually, like, no biggie) "I would want to adopt so that there would be less of a chance my kid would have diabetes."  

That hadn't even been a whisper at the corner of my mind when she started the conversation. I didn't even realize she knew it could be genetic. But instead of feeling like I was hit by a truck, I just felt like I went over a slight speed bump. Instead of having the wind knocked out of me, I just felt a bit jostled. I said, "Well, you know that blogger I read, Kerri the girl (not Carey the boy)
? She just had a baby, and everything went fine..." L said, "I know," continued to put sticky tack on the back of her drawings, and breezily turned to the wall to find the best positions for her masterpieces. And that was that.

If you had told me a year ago that on a sunny Sunday afternoon, while I was lying on my ten-year-old daughter's bed, she would start a casual conversation about how she was considering adopting a kid so she wouldn't pass on the genes of an incurable disease to her baby, I think I would have crumpled onto myself and sobbed. But I didn't. I just paused. Because it made my heart hurt, for a moment. But there's nothing for it but to keep on. And so we do.



 
self-portrait from 2010
that she did NOT hang on her wall

===================================================================

Re-living this moment from 5 summers ago (which happened nine months after L's diagnosis, hilariously), reveals how so many things have changed since then. The support and community of the DOC was crucial for my family in those early months and years. And you guys are still important to us, just in a less diabetes-centric and more regular-old-friends kinda way.

So it's five years later and L still doesn't want kids, but for vastly different reasons. And diabetes is no longer this huge unknown that is at the forefront of our every thought and interaction, thankfully. The nurses in the hospital at diagnosis told me that L's diabetes care would some day be as mundane as teeth brushing, and I laughed in their faces. But I owe those gals an apology.

And here's a bonus of having your child diagnosed with a chronic condition, that no one ever tells you: once you and your husband and your nine-year-old have looked death in the face? You'd be amazed at how unfazed you can be when life throws other curve balls at you. Even the big ones. 

So #THANKSDIABETES.

And thank you DOC.

Saturday, March 7, 2015

meme x 4

hello friends! this meme has been making its way around the DOC and it's been so much fun to read everyone's responses. if you've not done it yet, please do, cos i'm interested in you x 4!

1. Four names people call me other than my real name
 
- shane
- shan
- shaza
- sha-na-na-na-na-na (sung to the tune from that one brady bunch episode)


2. Four Jobs I’ve Had


- jack-in-the-box fry cook
- fanzine publisher
- web architect for driveshaft



3. Four Movies I’ve Watched More Than Once


- once (lol see what I did there)
 
 

4. Four Books I’d Recommend 

[can't think of any which means i guess i need your book recs!]

5. Four Places I’ve Lived 

- guam ('73 - '74)
- dunoon, scotland (summers of '84 -'86)
- high wycombe, UK (school years of '84 -'86)
- encinitas, california ('92 - '97)
 
 

6. Four Places I’ve Visited

- dalkey, ireland
- saarbrucken, germany 
- diagon alley, orlando
- white sands, new mexico
 
 
 

7. Four Things I Prefer Not To Eat 
 
- celery
- cabbage
- liverwurst
- john bender's shorts

 

8. Four of My Favorite Foods
 
- potato chips
- brownies
- my grandma's enchiladas
- my grandma's sopapillas
 


 9. Four TV Shows I Watch

- survivor (probst as screaming soccer mom during challenges = fave)
- jeopardy (ken jennings is everything)
- louie 
- the last season of parks and rec (finally)



10. Four Things I’m Looking Forward To This Year

- seeing hedwig on broadway again (maybe)

- colm mac con iomaire's US tour
- seeing friends and U2 in chicago (please enjoy this gif from a previous time i saw friends and U2 in chicago):


 
- friends for life 2015
 
 
 
11. Four Things I Am Always Saying
 
- hashtag no ragrets / hastag some ragrets
- did you bolus
- i didn't think this all the way through (also the name of my autobiography)
(alternatively, for the fans of 'new girl': also the name of my sex tape)
 
 
OKAY NOW IT'S YOUR TURN!  GO!

Friday, February 6, 2015

pics

[in lieu of actual content, please enjoy a couple of photos.]

my friend Z came to town and brought his hasselblad with him. i know nothing about cameras except that this one reminded me of the one max uses on 'parenthood', because you have look down through the viewfinder.

Z is a pro and stuff so we went for a walk until he found a suitably gritty backdrop to snap a couple of pics. then we had to wait for them to be developed. oh the novelty!



after he snapped that shot we were leaving but we stumbled upon a toy gun in the yard so obviously we had to shoot the cover for our not-yet-released hardcore rap record from the 80's.


Saturday, December 27, 2014

holiday card 2014

Happy Holidays from my family (dressed as characters from Bob's Burgers) to you!

 
For the cost of an Ozzy Osbourne wig, TWO fake mustaches and a frozen sausage muffin we put the costumes together and cracked ourselves up while having our photo taken by our patient friend Jill.

In case you're not familiar with the television program, here are brief descriptions of the characters, 
as seen on the Bob's Burger's Wiki:


Linda is extremely outgoing, flamboyant, and has absurd obsessions with performing arts and dramatic tradition - she will occasionally take extreme measures to pursue these and make her family/bystanders join her in enacting this. Memorable quote: "Well, there wasn't a raccoon king in our alley until I went out there and picked my favorite one. His name is Little King Trashmouth. He's gay."

Tina is a hopeless romantic with minimal social skills.  She likes horses, rainbows, zombies, and writing erotic friend fiction. Memorable quotes: "I want a dry-erase board so I can write down all my private thoughts and then erase them immediately." and "And if boys had uteruses, they'd be called duderuses." 


While poor with business management and cursed with an unlucky streak, Bob's skills at burger cooking has been shown to be excellent, to the point where he has been referred to as a 'beef artist'. Memorable quote: "I'll tell you what the problem is. It's not dinner, and it isn't theater either. It's like the imitation cheese of theater."

+ + +

There are more members of this animated family but we didn't feel like dressing our cat up in a bunny hat so we skipped it. Here are some videos of the characters saying their catch phrases over and over. Please enjoy.

Tina saying "Uhhhhhhh...."

Bob saying "Oh My God":
  

Linda saying "Allriiiiight!!!" (sadly can't embed, but you can watch it here.)

ALL THE BEST TO YOU AND YOURS IN 2015!

Wednesday, October 29, 2014

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

Tuesday, September 2, 2014

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.


Sunday, June 29, 2014

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.