Barbie Girls: Amy and Emma, creators of Diabetic Barbie

17 Sep
Howdy cool kids!
I know it’s been awhile, I’m not even going to try making excuses for my lack of posts lately. Today I wanted to highlight an awesome DIY-project started by a mother and her 8-year-old daughter, Diabetic Barbie. After Emma was diagnosed with Type 1 Diabetes, her mother Amy was, like most parents, completely overwhelmed with the situation they were suddenly thrown into. Fast-forward to today, and the two are helping children with Type 1 Diabetes around the world cope and find support through a very different, fun way: creating doll and stuffed animal-sized diabetes accessories.

Way cooler than Sea World Trainer Barbie. Photo Courtesy of Diabetic Barbie.

I can’t even begin to express how supportive I am of this project. When my sister was diagnosed with Type 1 at the age of nine in 2002, she returned from the hospital with a teddy bear covered with patches, showing the areas you can test and give insulin injections. This was several years before I would be diagnosed so I didn’t fully understand what the diagnosis meant, so I think my thoughts were something along the lines of “UGH! The doctor never gives me stuffed animals!”

Something like this bad-boy.

Embarrassing, I know. My point is that incorporating diabetes into playtime can help with feelings of alienation (the rest of you pancreatically-challenged folks probably know what I’m talking about) and make kids more enthusiastic about being healthy. And, of course, it’s fun. The following is from an interview via email with Amy about Diabetic Barbie and what the future holds for the project. So enough of me, here’s the interview!
What the diagnosis process was like for Emma and yourself? What was going through your head when you found out Emma had Type 1 Diabetes and the care that it requires?
Emma was diagnosed on June 26, 2008 at 4 years old. I think in the beginning I was in denial really, or shock. I kept expecting the doctor to come in the room and tell me that they had made a mistake and we could go home. It literally turned my world upside down and I was torn between uncontrollable sobs and fear to trying to remain strong and in control for Emma’s sake. Her blood sugar was 33 (594) when she was diagnosed and she didn’t have any ketones. She felt good for the most part, so she really didn’t understand why we had to stay in the hospital all day. She just wanted to go home. I remember feeling like I would never be able to do this. I would never be able to give her needles everyday. I felt like I failed as her Mom and that we would never be able to do it.
**Editor’s Note: In the United States blood glucose is measured in mg/dl, but in most countries it is measured in mmol/l. Hence the reason that 33 (which would be scary low in mg/dl) converts to 594. Why aren’t we on the metric system yet?
How did you and Emma first think of the idea of Diabetic Barbie? Did you two have a sort of “Aha!” moment?
Emma actually came up with the idea for DB. She had been talking with her friends at school about how they heard there was going to be a bald Barbie for children with cancer. She came home from school that day and asked me why there wasn’t going to be a diabetic Barbie too! I told her that was a very good question, there really SHOULD be one too! After calling Mattel and getting told that they didn’t accept unsolicited suggestions for their products, I decided to make a little pump for one of Emma’s own Barbies instead. She loved it so much that she said, “Mommy, you should put that on Facebook so other kids can see!” So, I did, and here we are over 5,000 fans later!

“Emma wishing there was a Diabetic Barbie on shelves today!” (I thought the original caption was too cute to not include) Photo Courtesy of Diabetic Barbie.

Do you ever hear back from people that have ordered from you? What are the responses from kids usually like?
I have heard back from a lot of people who have ordered actually. It is one of my favorite things about doing this. So far all of the kiddos have loved them! So far the response has been fantastic! We have gotten orders from Ireland, Iceland, all over Canada and the US, as well as the UK. I think it is awesome, just knowing that these kiddos are getting to play with a toy that is just like them. It makes me smile.
 
I read at one point on your page you were creating packs for newly diagnosed kids in the hospital. What was that like?
I haven’t gotten a chance to make the packs for newly diagnosed kiddos at the hospital yet, we had planned on bringing them in this summer for the kids, but then our clinic appointment had to be changed because Emma and I went back home to Wisconsin to visit my family. Our new appointment is in October though, and I will be bringing a bunch with us then! Can’t wait to see what they think!
Why do you personally think it’s important for something like Diabetic Barbie to exist?
I personally think that DB needs to exist for our kiddos. It let’s them have something to play with that can be a source of comfort, a chance to educate their friends or siblings, just to make them happy, to have something that is just like them!

IT’S SO COOL!!! Photo Courtesy of Diabetic Barbie.

What’s next for Diabetic Barbie (I LOVE the pump pillow!) and you and Emma? Emma seems like she is already a stellar diabetes advocate.

Emma and I have a few things in the works these days and we are really excited! We are still pursuing the Build A Bear route, making things happen with our friends at Animas, and hoping to make more pump pillows and other d-related accessories too! Emma has been a huge advocate for her disease pretty much since day 1. Only four months after diagnosis she asked me if we could have a hot chocolate sale to raise money “for the people looking for a cure,” and we have held one every year since then. So that will be coming up in November as well!

Emma repping World Diabetes Day and kicking it with Lenny the Lion. Photo Courtesy of Diabetic Barbie.

And last but not least, if a 21-year-old woman hypothetically wanted to order a pump for a sock monkey she might hypothetically have, how would she or anyone order it?
If anyone would like to order an accessory pack for their doll, barbie, stuffed animal, etc. they can email me a sky0138@yahoo.com and let me know what colours/design/sizes they would like. I am using PayPal for payment.
The designs are truly endless. Ladybugs, rainbows, cow print, you name it.

And my personal favorite, Biker Penguin with a Leopard-Print Pump Case. Photo Courtesy of Diabetic Barbie.

That’s all for today, fantastic readers! Have a wonderful week and don’t forget to “Like” Diabetic Barbie on Facebook.

Hey hey hey, goobye.

Rachel

I’m ALIIIIIIIVE!

17 Aug

Howdy!

I’m not going to make excuses for the lack of posts all summer—BUTSERIOUSLYLIFEHASBEENSOBUSY. Fantastic, but busy. Here are some highlights:

1) I graduated!

Well, symbolically. I’m taking my last two classes this Fall and will graduate early in December. My family wanted me to walk so they could do the whole “AWW MY BABY’S ALL GROWN UP!” thing. Plus I put my blood, sweat and tears (literally) into my degrees and wanted to feel like a pretty princess with a BA all day.

Along similar lines…

2) My family ate dinner at the same table for the first time ever!

And no one died! My mama, stepfather, dad, stepmother, sister, and brother (in spirit)! At the same table! It was magic, but on a sappy note I am so happy with how far my family has come since circa 2000.

3) Trips around Oregon with my boyfraaan!

Why haven’t you taken me to see the alfalfa and wool, Steve?!

4) The most disastrous 4th of July ever!

Seriously. I missed most of the day because I fell asleep at about 6 p.m. and woke up at midnight next to a loaf of bread. I had a bump on my head for the following week from falling out of a car onto the street. But my blood sugar was swell!

I love America!!!

5) Work! Classes! Freaking out about the future!

And the event that brought me back to this blog…

6) The Death of My Insulin Pump

Hank. May he rest in piece.

HEAVEN HAS A NEW ANGEL.

Here’s what went down:

Of course, of all times for my pump to break it was while I was camping. On the Friday Steve and I left, my blood sugar was crazy high: 350, 268, 412. Gersh dern. Being the responsible diabetic that I am, I troubleshooted and tried everything. Site change, cartridge change, cord change, new vial of insulin. Still high as a kite.

courtesy of Kyra Brown, from Type 1 Diabetes Memes

I tried priming the pump (sorry for the hip diabetes lingo y’all) but nothing happened. Besides an emergency prescription reorder and a concerned citizen at the pharmacy who informed me what the life expectancy for people with diabetics is, the trip went swimmingly and I shot up with Novolog and Lantus to my hearts content.

Yesterday, I got around to calling my pump’s hotline to get a new pancreas sent to me. That is when I had the realization that maybe, just maybe, Hank would be revived if I changed the battery. I did, and my baby ROSE FROM THE DEAD! HANK WILL LIVE FOREVER!

But the excitement ended soon. The very patient hotline operator asked me what the pump’s date and time read. Whenever I change my battery the pump always thinks it’s midnight on January 1, 2007 before I change it to the right time. I thought that was normal and just accepted that Hank was living in another decade, but apparently that’s a glitch and the operator told me that Hank needed to be sent back.

And like that, Hank was gone.

Hank, we’ve had some incredible times. You were always at my side (literally) or tucked into my bra. Remember that one time you ran out of insulin and blasted Für Elise in the middle of my final exam? Haha, yea, me too. Or that time you got tangled with a book I was binding at work?

Claaaaaassic Hank.

You and your crazy antics. Falling out of my pocket, getting caught on door knobs, running out of battery and making the most god-awful sounds imaginable. You were always such a comedian, Hank.

See you on the other side, old friend. Here’s to getting back on the blog train.

Rachel

Also, y’all should check out this page. My ugly laugh resurfaced because of it.

The “Bad One and The Fat One”: The Schism of Type I and Type II Diabetics

1 Jun

As this is my last post that counts for coursework, I wanted to write about something that particularly fascinates me about the diabetes community. There is unarguably tension between people with Type I and Type II diabetes. This article I read a few years ago in the New York Times explains part of the issue a lot more eloquently than I ever could, but I’ll try my best to break down why this is and why it’s so problematic.

First, the biggest differences between Type I and Type II diabetes:

  • In Type I diabetes, insulin is essential for survival. The islet cells of the pancreas have been destroyed in an auto-immune response leading to total loss of insulin production. Without natural insulin, blood glucose levels rise well above healthy levels. There are a variety of theories, but it is still not known what triggers Type I diabetes. Type I was once commonly called “juvenile diabetes” because it is often diagnosed in children, but it is often diagnosed in adults (like yours truly who was diagnosed at 19).
  • Type II diabetics can usually produce some insulin, but it is either ineffective or an insufficient amount. It is caused by a variety of factors, namely genetics, age, diet and exercise. Type II is often treated with oral medication, but can sometimes be managed simply by adjusting diet and exercise. There are also some people with Type II diabetes that take insulin the way someone with Type I diabetes would.

Shortly after my diagnosis, I returned to the hospital for a routine blood test. As I rode the elevator up to the millionth floor (slightly hyperbolic again), an older man with a Vietnam vet hat using a scooter came on the lift. He took a look at my medical bracelet (this was before getting my tattoo) and asked me what I had. His eyes lit up when I said diabetes. “Oh! Me too! Except you probably have the bad one. I have the fat one.”

The bad one and the fat one?

Let’s be blunt for a moment. The complications that come with diabetes are horrid. It is the leading cause of non-truamatic limb amputations. Diabetic retinopathy. Diabetic nephropathy. Diabetic neuropathy. Blindness, kidney failure, increased risk of pleasant things like yeast infections, heart problems. Then there are the immediate concerns of hypoglygemia, which causes seizures and coma, and hyperglycemia, which leads to diabetic kedoacidosis. Type I and Type II diabetics are both at risk for these. Saying that Type I diabetes is the “bad diabetes” implies that there is such thing as “good diabetes.” There isn’t.

As far as Type II being “the fat diabetes,” I want to tell you about my friend. We won’t use his name. It might start with an “R” and end with an “aj.” We’ll just call him “Schmaj.” So, Schmaj is one of my best friends going back to high school. He plays guitar, listens to kick-ass music, is super smart. He once took me to a Rush concert. We were probably the youngest people there, but I was so excited to see the whites of Geddy Lee’s eyes with Schmaj that I didn’t even think about it. One time he drove me up a mountain just so I could see snow.

Last year I got a call from Schmaj out of the blue. He sounded upset, and like the overly worried person I am my mind started racing. He has girl problems, he was arrested, he was kicked out of school. Maybe all three! At the same time! What he told me came completely out of the blue: Schmaj’s last few blood glucose tests were slightly higher than normal. This is usually an indicator of Type II diabetes or at least pre-diabetes (the period before the condition develops into full-fledged diabetes). Schmaj, the vegetarian cross country-running fiend, was one of the last people I would ever expect to have Type II diabetes. Some of Schmaj’s family, including his father and grandfather, had Type II diabetes and it was passed down to him by heredity.

The genetic component of Type II diabetes is not stressed enough. If you have an identical twin with Type II diabetes, you are 96 percent more likely to be diagnosed yourself. I feel that a lot of the stigma against Type II diabetes emerges from existing, unreasonable anxiety about aging and especially weight. The issues behind “fat-shaming” Type II diabetics are so complex that I won’t even attempt to tackle them tonight. It’s easier to blame someone for being overweight or lazy than to show compassion and offer help.

Because of the misconception that people with Type II diabetes are all “fat and lazy,” a lot of Type I people want to distance themselves from the group. Less than 10 percent of diabetics are Type I, so they are often overshadowed and erased by the Type II community. However different the two conditions are, there is a lot of overlap. They have the same set of complications. Research and programs for the larger umbrella of diabetes can often benefit Type I and II. Type I and Type II diabetics come in all shapes and sizes–I know some wonderful large Type I people and some Type IIs, like Schmaj, that are the antithesis of “fat.”

Finally, arguing between Type I and Type II diabetics keeps people with gestational, monogenic and latent autoimmune diabetes out of the conversation. If you thought Type I was an anomaly, most people have never even heard the terms “monogenic” and “latent autoimmune diabetes.”

Well, my word count is five times what it should have been but still feel that there is so much more to say about this. Please keep in mind that what I have to say comes from my own experience and my own little brain, so I can’t speak for everyone with dia-beetus. Different strokes for different folks, as a wise man once said.

Rachel

ADA’s Tour de Cure

1 Jun

As proven by the American Diabetes Association’s Tour de Cure, cycling events can be a great fundraising opportunity simply because of the variety of people that can get involved. Events like the Tour attract every group ranging from families to serious cyclists. The Tour usually provides several routes appropriate for different ages or levels of experience. For example, the Tour de Cure in San Diego has four routes: 100 miles, 50 miles, 30 miles, and a 10-mile “fun run.” JDRF also holds a few bike tours every year, but it targeted towards experienced cyclists.

My father wants to do a JDRF bike ride in Death Valley with me because he hates me thinks it would be a positive experience.

There are also spooky rocks there that move on their own.

Last year, the Tour de Cure raised $18 million dollars collectively between 55,000 cyclists and 80 cities. The funds raised by the tour go directly to fulfill the ADA’s mission: “to prevent and cure diabetes and to improve the lives of all people affected by diabetes.”

The Tour de Cure is more than a fundraiser. I have talked to people who have met lifelong friends through “Team Red,” a team at the Tour made up only of people with diabetes (after a little investigation I found that their non-diabetic supporters can also join the team). After the ride, all the riders come back together for post-cycling festivities. At the Hillsboro, OR, Tour (which just so happens to be coming up on July 28, nudgenudge) the cyclists get a complimentary lunch and live music from Portland-based blues musician Curtis Salgado.

Sounds like a good time to me!

 

Rachel

JDRF’s Walk to Cure Diabetes

1 Jun

Groups like the American Diabetes Association and Juvenile Diabetes Research Foundation rely largely on private donations as well as some creative fundraising. For example, every year around Mother’s Day I get an email asking to order flowers with a percent of proceeds going toward JDRF.

I opted for a cement toadstool instead.

Two of the groups’ most highly attended events are the Tour de Cure (ADA) and Walk to Cure Diabetes (JDRF). Next post will focus exclusively on the Tour de Cure because I think it’s a super rad event that deserves its own 200+ words (conveniently the length guideline for these posts!).

I’ve only been to the Walk to Cure Diabetes once, a couple years after my sister was diagnosed. I don’t remember much except that I rollerbladed instead of walked and felt like a total badass leaving my family in the dust! And then I got lost for a little bit and ended up by a freeway onramp.

We also made embarrassing shirts for the occasion:

We dug those beauties back up for her graduation. I plan on wearing it to every significant event in her life. Wedding? Had a baby? College graduate? Alright!

It’s an all-ages event that takes place in every state. There is no nationally set date for the Walk to Cure Diabetes but you can oh-so conveniently check dates and locations on the event page. A lot of participants join teams in honor of loved ones with diabetes (like Team Ally, the most creative name ever) or corporate teams. JDRF gives walkers a lot of suggestions for how to raise funds like “10 days to $100″ and Facebook campaigning. There is even a list of “101 Easy and Fun Fundraising Ideas.” Some of my favorite:

>Jeans/Casual Day: Ask your company to allow a Jeans Day. For a donation of $5, employees may dress casual on a designated day. Or, sell a year’s worth of casual days. (WOAH that’s too crazy!)

>Ask your doctor(s) and dentist for a donation.

>Ask your lawyer and insurance agent for a donation.

>Ask your auto mechanic for a donation.

>Ask your veterinarian for a donation.

>Ask your real estate agent and mortgage broker for a donation. (now we’re getting obscure)

>Ask your dry cleaner for a donation.

>Ask you barista for a donation.

>Ask your hair stylist for a donation.

Okay, so pretty much ask everyone for a donation! As weird as a lot of these sound, they must work for some people if they’re on this list.Personally, a lot of these don’t seem like fun or easy, at least not easy for me because I’m bad at talking to people, especially asking for money. And then I sing them this song:

Rachel

D-Life, Diabetes Forecast, and Countdown: Diabetes Publications and Television

1 Jun

Howdy!

T-14 days until my summer begins, and you know what that means…

SUMMER READING!

There’s an ever-growing stack of books and magazines I’ve been hoarding in my apartment that’s up to my knees right now. The last few issues of this bad boy are in there:

Diabetes Forecast, or just Forecast as hip kids like me call it, is a monthly publication by the American Diabetes Association. It is directed towards all people within the diabetes spectrum, but I would say more so towards Type II folks. The magazine details the latest research, health tips and really good recipes.

Countdown is another great magazine to check out. It is run by the fine people at JDRF. It’s exclusively about Type I diabetes and publishes the latest findings from JDRF studies. Countdown also features lifestyle advice ranging from travel to pregnancy with diabetes. It is no longer printed but is available online and free!

And then there’s D-Life. I don’t have a television but when I visit home my mom and I are usually camped out in front of the TV set every Sunday for the glorious 30 minutes that it’s on.

The show features such snazzy people with snazzy names as Mother Love, Benno, Jim Turner and our favorite, the steamy chef Michel Nischen.

He just wants to love you with his eyes.

Not being able to watch it every week fills me with sorrow.

Rachel

Dia-beetus Testin’ Supplies: Diabetes in Mainstream Media

1 Jun

This is what comes to mind for a lot of people when diabetes gets brought up:

Despite the fact that 25.8 million people–8.3 percent of the population–have diabetes, there is very little accurate information out there. If I had a dollar for every time someone told me cinnamon cures diabetes, I really could get my dia-beetus testin’ supplies for free. AMIRITE, Wilford?

As much as I looooove talking about diabetes, I have to admit that it’s a pretty mundane condition. Wake up, test, shoot up on insulin, test, shoot up, test, drink juice box, test, sleep. Not in Hollywood though.

In the 2006 film “Panic Room,” the protagonist’s daughter has a severe hypoglycemic episode and seizes.

Judi Dench’s character in “Chocolat” hangs around a chocolate shop and dies of diabetes-related complications.

In “Momento” Sammy Jankin’s wife asks him to give her insulin shots. She dies.

The character Phillip Morris of “I Love You Phillip Morris is diabetic. He lives!

And, of course, “Steel Magnolias.” Someone told me that, as a diabetic, I shouldn’t watch this film. So I did.

This movie has everything. Hypoglycemia, diabetes and pregnancy, kidney failure, coma. It’s a real pick-me-up.

The movie is based on a play by Robert Harling. Harling’s sister Susan died of diabetes-related complications, which makes a sad movie approximately 36,982 times sadder.

When it comes to television and film, I used to believe something along the lines of “visibility at any cost.” A “Law and Order” episode where a computer virus kills two patients at a diabetes clinic? Freaking sweet! I’ve definitely mellowed out since then. I still feel that diabetes has to be visible and featured in media, but honest, relevant information should be presented.

Rachel

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