From The Belt

Another Reason to Hate Wal-Mart

2012-01-30T12:48:00.001-08:00

Well, happy 2012!!! Enjoy the break? I did too. Headquarters are gearing up to move to New Orleans, Louisiana, so the blogs have been neglected. I apologize.

My own writing has even been neglected, but luckily my nice husband has been sending me headlines that you should be aware of. I do enjoy the ability to copy and paste a blog entry when needed. So, thanks, honey. The title of this post is exactly the subject line of his email...

We don't shop at Wal-Mart, and haven't for years and years. A lot of people, a lot of good people, shop at Wal-Mart. A lot of good people who think they don't have money for other companies, who think that they're supporting working Americans by supporting Wal-Mart, and who think they're sticking to their working class guns by not getting on board with the liberals who protest Wal-Mart's economic, employment, and environmental policies. I offer you this...

Walmart manager's unreasonable conditions for diabetic employee violated ADA. A Walmart meat department employee with diabetes had always kept her testing kit close by at her desk in the work area. A manager ordered her to remove it to her locker, at a far end of the store. (There was no apparent significant reason for this direction.) The employee protested that she needed to frequently test her blood sugar, and she could not get to the locker soon enough to test and control her condition. Nonetheless, she was ordered to remove the test kit. Then she was told that if she left her work station to go to her locker, she would be fired. She could only test her blood sugar on breaks or lunch. Unable to effectively test and control, the employee soon had a major diabetic reaction while in the store's meat cooler. She had a seizure, was hospitalized and unable to resume work at Walmart. Walmart defended by claiming she was not actually disabled because she had always been able to perform all essential functions of her job. The court rejected this defense. The plaintiff had been able to do all functions until the manager's direction and withdrawal of any accommodation made it impossible for her to successfully function. Berard v. Walmart Stores East LP (M.D. Fla,, 2011).

My husband got this from a newsletter he receives from a lawyer he knows here in Madison, but I decided to double-check it on the web before posting. And while I did find the story, so I was comfortable posting it here, I found many similar stories about Wal-Mart employees (in the meat department, pharmacy, front end) in addition to some bizarre policies for customers trying to get their supplies.

The place where you grocery shop has no bearing on whether you're a good person or not. But consider how a company that feels the way it does about it's able-bodied employees may treat those employees who require breaks. And then imagine it's you or your diabetic not getting them.

Don't be scared, you'll like Target.

FDA issues guidance for artificial pancreas

2011-12-02T18:34:00.000-08:00

My husband's boss was nice enough to email this CNN Health article to my husband, who forwarded it on to me. AllI could do was snort. I've been hearing about insulin nasal sprays, pancreas transplants, and islet cell transplants since I was a kiddo, and just don't have the patience for it anymore. But what do YOU think?

The FDA issued draft guidance on Thursday, intended for researchers and device manufactures working to develop and gain FDA approval for an artificial pancreas device system for treating type one diabetes.

In June 2011, the FDA provided draft guidance for development of an earlier type of artificial system that would allow an insulin pump to suspend insulin delivery when blood glucose levels reached certain levels. The system is called the Low Glucose Suspend System.

The new guidance is for a more advanced type of insulin pump system that includes programming to allow the pump to run itself and to determine when it should and shouldn’t provide insulin to the diabetic.

While some clinical trials have been performed in hospital-only settings, and show great promise, the new FDA guidance provides a blueprint for testing and developing a so-called artificial pancreas system in clinical trials both in hospital and at-home settings. The guidance includes parameters for clinical trial including endpoints, results, the number of patients and length.

Juvenile Diabetes Research Foundation President and CEO Jeffrey Brewer called the FDA guidance “a huge opportunity for patients.” He went on to say that it is a “milestone event that the FDA went on record about how companies working to produce the artificial pancreas can do so in a reasonable period of time,” although he noted that the guidance is “a long and technical document and it’s implications need to be digested.”

The FDA will publish the information in the Federal Register, with a notice soliciting public comment. The JDRF launched its campaign for the development of an artificial pancreas in 2006. Contrary to it’s name, an artificial pancreas does not involve synthetic tissue or organs, but combines existing insulin pump technology with programming that would allow the devices to work without human interaction.

The artificial pancreas system has been called the “holy grail” for treating type one diabetics who require insulin to maintain healthy blood sugar levels.

The artificial pancreas will use the currently available technologies of an insulin pump (a device worn outside of the body that delivers insulin into the body through tubing attached to a tiny plastic shunt that is inserted into the skin and moved every few days) communicating with a continuous glucose monitoring system (which consists of a sensor that inserts into the skin and communicates blood glucose levels to the insulin pump or to an electronic monitoring device). It adds a third technology– programming for the pump– that uses mathematical algorithms set up to calculate the diabetic’s usage of insulin and allows the pump to self-administer insulin into the diabetic’s body, based upon readings from the glucose sensor.

Together, the technology would provide patients with automatic insulin delivery, instead of patients having to manually program the pump to deliver insulin. The artificial pancreas will allow type one diabetics to maintain healthy blood sugar levels, and the goal is to prevent unhealthy high and low blood sugar swings that are common in diabetes.

While neither the FDA or JDRF would offer an estimate on when diabetics will see an actual artificial system on the market, the new guidance opens the door for clinical trials to begin more rapidly, and it will potentially speed up the approval process for the devices.

Post by: Ann J. Curley - CNN Medical Assignment Manager
Filed under: Diabetes

Announcement Regarding DIABETIC ROCKSTAR

2011-04-24T10:28:00.000-07:00

Realizing that a lot of you may not be familiar with Diabetic Rockstar, I'm taking this opportuity to share an email that members received last week from founder Christopher Thomas in hopes that you'll get on board with this fantastic organization.

Diabetic Rockstar is my favorite, because instead of raising money for a cure (read: foundations, executives, administrative costs, etc.) Diabetic Rockstar supports diabetics living with this disease NOW. The money raised by Diabetic Rockstar goes to supplies and medications for diabetics. By all means, support research, but in this country with our insurance policies who's helping diabetics survive on a daily basis? Diabetic Rockstar, that's who. And they've got a lot of big changes coming. I'll let Christopher take it from here, but please take this opportunity to learn more about Diabetic Rockstar and get involved with the organization and on the site. You'll get a lot of out it, and do some good...

This message is a long time in the making, a long time coming, but I thought I should share what in the world is up with Diabetic Rockstar (and myself, as well).....

First of all, HELLO, it's been a while, especially for me personally. As founder of DR I worked very hard during the first few years since inception to make sure that DR was the coolest, most unique, in-your-face, take-no-prisoners website and non-profit. In the process, as time passed, DR also grew exponentially, especially from a non-profit standpoint, as far as the visibility and reach of our programs.

That growth certainly, and obviously, slowed during the past 18 months. Behind the scenes, volunteers and board members like Arnie Franks and Naomi Kingery worked their tails off to insure we kept our mission statement and core values alive--but they can't do everything, which is where I personally am responsible for some stagnation in the principle website and lack of updates, lack of fund raising events, etc etc.

Some of you, a select few, know that I've been dealing with some pesonal stuff that took me away from being a Rockstar. In fact, a lot of it was very un-Rockstar like. I won't bore you with the details, but finally, just maybe, the light at the end of the tunnel is here, and I can get back to my passion--this website and the causes DR fights for.

There has been a number of events recently that have disturbed me greatly in the diabetic community, even with our own members and even myself. And these events made me realize something..... Diabetic Rockstar has slowly evolved AWAY from the mission and principles we were founded upon. We've almost become a shell of our former selves. And that's another motivation for this little letter....to tell you that over the next few months we here at DR, and myself, are getting back to what makes Diabetic Rockstar the kick-ass site it is. We are getting back to being Rockstars. To being Rebels. TO FIGHTING for diabetics, the uninsured, the financially struggling, the newly diagnosed, FIGHTING against greed and immoral corporate practices. FIGHTING against stereotypes and misconceptions. FIGHTING FOR THOSE WAITING FOR A CURE.

The next few months are going to be flat-out INCREDIBLE. We have already implemented about ten percent of the changes we plan; you can now log in to DR via your Facebook profile (or sign up for DR), we have a custom suggestions/ideas page to get direct imput from you, we've built apps for Twitter and Facebook integration, changed our layout, added new music that defines our spirit and lots more.

There's more coming, though. Soon there will be a DR Mobile App for Smartphones and the like. We'll unveil new Mentoring,Fight It, Productions and Events websites. We'll unveil a NEW MENTORING program that is FIRST OF ITS KIND and will REVOLUTIONIZE the diabetes community. We'll announce new partnerships with other charities....we're done thinking we can do it all lol....now we will work TOGETHER with others to help people.

Our Merchandise options and products will evolve. So will our fundraising programs.....There will be events in approximately 25 United States and Canadian cities that will coincide with the Mentoring Program launch as well as the release of "Addict. Rockstar: A Story of How Diabetes Saved My Life. Twice.", a book by yours truly coming this summer.

In short, Rockstars, I want you to know that we are getting back to being....US. To being unique.

We are not a site for everyone, but our cause IS.

Christopher Thomas, 2007.

Over the next few weeks, and even months, you will slowly see a LOT of changes at the DR site along with a LOT of awesome announcements. I hope you will continue to be awesome Rockstars and enjoy the ride.

It's been a while.

It's good to be back.

Rock On.

Christopher Thomas

President, Diabetic Rockstar Inc

And now for something completely different...

2011-03-30T07:55:00.000-07:00

Chris Silas Neal

Yes, I know, this is a diabetes blog. One that hasn't had many posts lately - I know that, too. There's so much going on in the world, my state, hell, my town and neighborhood, right now, that is acting as a great distraction for me, and this makes posting about my disease less than a priority. What is a priority are politics, rights, and changes that would surely hurt more people than they would help, all in the name of fiscal responsibility. As I've been caught up in the back and forth, and the "what the hell?" Mark Bittman's article in the NYT today floored me. "Can I post this on the blog? We can't fast! We're diabetic!!!" Just because we can't participate, doesn't mean we can't and shouldn't still be aware of what's going on around us. And this is a big deal. And Bittman writes about it directly and beautifully.

Another person currently rocking my world for the last week or so is William Cronon. A Professor of History at UW-Madison, and the president-elect of the American Historical Society, wrote an Op-Ed piece to the NYT, published Monday. That's where it all started. Not being the educated sort, the Republican Party of Wisconsin filed an open records request for his emails - any emails using the terms "rally, recall, collective bargaining" or the name of any Republican politician who has found him or herself embroiled in this bad decision among others.

Cronon responded on his blog, and it's brilliant. Really. Read it. Read everything he's written. He's intelligent, he's somewhat objective, he's cool-headed. And he makes some amazing discoveries.

I'm clearly NOT a political writer. I'm an artist and educator who has been moved by recent events, so much that I'm addressing them on both of my blogs today. I'm trusting you to follow the links provided and make your own decisions. And maybe you'll learn something. I know I did.

I promise, we'll return shortly to our regularly scheduled programming. A post about all of those people who say "I could never give myself shots!" to whom you reply "well, they didn't really give me a choice" seems like a logical jump...

There's No Harm in Being Social...

2011-03-16T10:13:00.000-07:00

Really, there isn't! Despite my cranky demeanor and anti-social leanings, I actually ENJOY socializing with other humans. Sometimes.

But this sounds fantastic.

A group for Madison's Adult Type 1 Diabetics is getting started, and there are lots of reasons you should go to it - some of which I'm pulling off of the flyer, and some of which I'm making up. If you can guess correctly which is which, I'll buy you a beer at this event!!

Reason #1 Hear 3 adults living with Type 1 diabetes share their stories and experiences. (Clearly, you dig this kind of thing, because, here you are.)

Reason #2 I will not be one of those adults. How many of my stories could you actually live through, anyway??

Reason #3 It's at the Vintage Brewing Co. out at 674 Whitney Way, and you love beer, you Sconnie, you.

Reason #4 Meet and network with other adults who understand the challenges you face everyday.

Thanks to the Divabetics for
making this monstrosity.
And go tell your mom
about their site.

Reason #5 Your partner really needs to talk to other people who live with diabetics and know the joy of making a combative or at least difficult adult drink juice. Your partner really needs these friends in his/her life.

Reason #6 This horrible cat will get you if you don't.

Reason #7 They're raffling off an iPod Shuffle, and if you give your kid a Shuffle, he or she will finally leave you iPad alone.

It's on April 14 from 6-8pm at the Vintage Brewing Co. at
674 So. Whitney Way.
The number to the Vintage is 608.204.2739.
There will be light appetizers and a cash bar, so you can even check out what appetizers are good for a party of diabetics, cause I know that's all you have, right???

See y'all there!!!

RECIPE: Vegan Tapioca Pudding

2011-03-15T08:31:00.000-07:00

Sometimes you want to celebrate loudly and emphatically. Other times, you are so inspired by an accomplishment that you are driven to accomplish another, far more difficult task. Making vegan tapioca and figuring out egg replacement powder was the kind of celebration yesterday called for. Ain't no part like a vegan tapioca party, heeeeey!

Trust me, a softly lit photo of hard dried tapioca pearls is far more appetizing than a photo of the prepared tapioca in a tupperware in my icebox, so you're welcome.

I use Reese Large Pearl Tapioca, found above the Jello in my grocery store. This recipe is strongly derived from the recipe on the back of the tapioca bag, though with half the sugar and vegan. *I also split up the vanilla and plain soy milk unevenly, but try your own variation as you see fit. Play with it as you will...

What You Need:
-1/2 cup tapioca pearls
-*2 cups vanilla soy milk
-*1/2 cup plain soy milk
-1/4 teaspoon salt
-1/4 cup turbinado sugar
-6 teaspoons egg replacer powder, divided (I use Ener-G brand, available at Whole Foods)
-1 teaspoon vanilla

1. In a bowl, soak tapioca in 2 cups of room temperature water overnight. Drain.

2. In a double boiler, heat milk until no longer cold. Add salt and tapioca. Continue heating until small bubbles form at sides of pan. Cover, turn heat to very low and cook for one hour, stirring occasionally. Make sure that mixture does not simmer or boil.

3. Add 3 teaspoons of egg replacer powder to small bowl, with 2 tablespoons warm water. Stir. (These are your egg yolks!) Beat in sugar until mixture is pale and thick.

4. Add a bit of the hot mixture to the egg replacement powder and sugar and blend thoroughly. Add this to the hot mixture, stirring constantly. Place the double boiler over medium heat and cook until very thick, about 15 minutes.

5. Beat the other 3 teaspoons of egg replacer powder with 4 tablespoons of warm water until relatively stiff. Slowly fold into hot tapioca mixture.

6. Stir in vanilla. Serve warm or chilled, with or without silver ponies.

Makes 6-8 servings.

Now go celebrate something amazing that you did!!!! And keep it down, you know your neighbors will call the cops on that party...

Pink is NOT my Signature Color

2011-03-14T16:46:00.000-07:00

I was ten years old in 1985 when I was diagnosed. I was in a small private school where I'd been since kindergarten, where my brother had gone as well, and was surrounded by people who seemed like family for a big part of my life. When I got to high school, I was sent to a public high school in a new neighborhood, where my brother had never gone, and where only about three of the kids I'd grown up were going as well. I was in a completely new environment, and had to, for the first time really ever, explain to people that I was diabetic, what that meant, and why I was being an asshole on the first day of French class (low blood sugar + foreign language instruction = AWESOMENESS.)

In 1989, I was 14-years old, had had diabetes for 4 years, and was living in Louisiana, when Steel Magnolias came out. My best friend Dotty and I raced to the theater, eager to see Julia Roberts, who we knew as Daryle in Satisfaction and Daisy from the classic Mystic Pizza, in something that was filmed in Natchitoches, and that was about a diabetic. We heard Hollywood speak to us directly, and were overjoyed. That movie sucked the air right out of us.

Juice IS best.

It was about a diabetic, and the low-blood sugar scene was exactly right. I had lows like that, I told my mom I hated her in the middle of them, I cried afterwards. But what we took home from that movie was that a baby would be the literal death of me. My future husband would have to raise a baby without me, my Mamma would lose her shit in a graveyard, and I would get a terrible terrible haircut. When I was a fourteen year old virgin, before I'd ever been in love, I decided to adopt. And I kept that decision for years...

My pediatrician had once told me that I could his patient until I got married or had babies. I felt fine with that. I knew I wasn't having babies, and I really loved my pediatrician. Even when I called to make my own appointments and the receptionist would ask "and how old is the child?" I loved him so much that I could say "I am the child, and I'm nineteen" with no shame. I was 25 when they pushed me out of that nest. My first grown-up doctor was a polar opposite, insulting and self-serving, limiting information to me as a patient to keep me in the dark as to the logic of his decisions. He would yell at me for doing things that he himself was doing, his staff would tell me. He told me an insulin pump was not that beneficial, and that I couldn't afford one anyway. He told me I was fat. He told me I'd go blind, not based on any test results, but just to be mean. He validated every myth and fear that Steel Magnolias had raised in me, that it didn't matter what you did, you would die, and you couldn't help yourself. You would be a victim. You would be a casualty. When I left him, I felt the same as when I'd left an abusive boyfriend years prior.

I worked at a hospital in Lake Charles, and the man who had been married to Shelby (nee Susan) in real life was our Medical Director. He was lovely and kind, and when people at the hospital mentioned his first wife, I pleaded for information. I got to see photos of their baby (now a handsome and strapping young man). Nurses at the hospital, when I asked, would tell me that she hadn't had the best control, and remind me that, back then, diabetics weren't self-sufficient and empowered like they are today - even those that are married to doctors.

I got married in 2003 and I moved to Wichita in 2003. I got a new doctor who, one day, while looking at my labs, mentioned how great they were, what good control I was in, and asked if my husband and I were planning to have a family. "You could easily have a baby with A1Cs like this" he said, casually. I told him we were going to adopt, and when I got outside to my car, I cried. Not because adoption was a second or forced choice, (we're working on our adoption papers and applications now, and will adopt regardless of what happens on the child-bearing front) but because I'd built my belief system on myth and fear. The way I knew my world to be crumbled that day, and when my husband I got home I told him what the doctor had said, and we started to talk, and to think.

I went on pump therapy in 2006, and it changed even more for me. My lows became manageable, and I was able to get rid of my nighttime low blood sugar alarm. My A1Cs started to creep lower and lower. We started talking to the doctor's in ernest a couple of years ago about conceiving, and, while I have 6 (count 'em, SIX) doctors, they've never been all in agreement that NOW was the time. So we've worked on better labs. And we've waited.

You know you want this.

Until today. Today I got the go ahead. Today my A1C was perfect, and when the doctor asked "so what'd you do differently?" I told him. I got a treadmill, and kept running all winter long. I went vegan at home, and when you eat 95% of your meals at home, that makes a huge difference. We made ourselves comfortable with double-digit blood sugars - burned by lows in the past, we've been more comfortable with higher sugars, but rewired ourselves to not be scared of the lower end of the range. And it worked. Today my A1C was perfect. Today, I spoke at length with my perinatologist about ovulation tracking, how we can conceive quicker, and I made vegan tapioca to celebrate. (Nothing like stirring hot soy milk for an hour to express joy, I tell you what!)

Today, I kicked the shit out of Shelby and, today, found out how awesome I actually am.

Wouldn't you know, that in looking for a great still of the "drink your juice" scene, I came across this blog. Clearly, all of the diabetics are wired into the same system.
And, Karen, you're the shit....

Life in the Belt

2011-03-11T14:57:00.000-08:00

fried bread pudding
Lake Charles, Louisiana

I read this week that scientists have identified a part of the US as the "Diabetes Belt". The diabetes belt includes Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Texas, Virginia and West Virginia. Lots of places where one could procure a fried pie or bag of cracklin' at the gas station, if you know what I mean. But it got me thinking, and, consequently, writing...

I was diagnosed with Type I diabetes when I was 10 years old. I had spent the week guzzling water and making hundreds of midnight trips back and forth to the bathroom; when my parents spoke in hushed tones about how it could be diabetes or a kidney infection, I prayed for diabetes. Having just seen an episode of The Cosby Show where one of Denise's friends had to have surgery for a kidney infection, I was having none of it. Little did I know what I was asking for.

I remember my older brother crying when we went home from the doctor's office to pack a bag for the hospital, and that was the first and really only time I got scared. I spent a week in the hospital, learning all kinds of new stuff, and it was pretty exciting to me. My mom spent every night with me, and I had a purple hippo bulletin board in my room. I made friends on the pediatric ward, and didn't understand why everyone that was coming to visit was such a fucking bummer. Even the kids at school, when I returned to pick up assignments, looked like I'd been given some horrible sentence. I've never felt that way. Yes, I've gotten pissed, and I've apologized to my husband for sassing him when I should have just been drinking my juice, but I've never thought this was something I couldn't handle or live with.

I have bladder control.

I don't scream obscenities at strangers, unable to control myself.

I can have orgasms.

There are certainly worse things that the doctor can tell you,

am I right?

My family spent the better part of my teenaged years at camps, fundraising, and being members of the American Diabetes Association and the Juvenile Diabetes Foundation. Any time there was an article in the paper about camps, or Type I diabetes, my friend Sadie and I were the models. I had some great diabetic pen pals that I'd met in the "Making Friends" section in the ADA magazine Diabetes Forecast, one who was in prison (NEAT-O!!!) and one who made a fairly obscene phone call. I was thirteen. Those organizations aren't at the top of my list anymore as deserving of my energy or my money. I meet moms who are on the boards of these organizations, who spend every minute talking about a cure for their child, and I wonder how much time all of those meetings are taking them away from that child.

After 25 years and countless articles about insulin nasal sprays, pancreatic transplants, and being this close to a cure, I realized that it was more important to live my life to the fullest, and to do what I needed to do to make myself happy - waiting around for a cure wasn't doing that. What I had loved the most about my diabetic life was the groups of other kids I'd met who could talk about how to answer questions from kids at school, how to dose for beer. We weren't waiting for a cure; we were living our lives, albeit with one extra step thrown in before meals and a few extra things in the book bag.

It catches me off-guard sometimes that I have a chronic disease. But I do. My husband and I are about to start a family. I started pump therapy in 2006. I have no complications, which is a relief because I'm a visual artist. My A1Cs get better every draw. I feel pretty good about my life, and about my disease. I don't forget about it, but I don't live for it, either.

This blog will about my day-to-day life, my screw-ups and my ridiculous stories (faking a low so your parents won't know you're drunk comes to mind as a definite future post.) We'll talk about how diabetics are portrayed in the media and how that can really screw you up. We may mention diabetic celebrities - why the hell not?! I'll give out a recipe every now and again. Let's talk about artificial sweeteners!!!! (that was in my Oprah voice, please read again with appropriate emphasis...) Ask me questions and I'll ask you questions, too. I encourage you to learn, to get a good doctor and stand up to her, to carry sugar pills in your bag and to make your life the way you need it to be TO MAKE YOU HAPPY.

And for Pete's sake, stop eating those fried pies...they're terrible for you.