A Bad Case by Erin Spineto

An original comedy series about four friends

Are you an aspiring actor with diabetes? Do you have big dreams of bringing your blood sugar to the big screen? Read on! Erin Spineto has a project that you might be interested in. For more about how it all came to be, here’s Erin.


I was watching a CBS show the other night that had a diabetic character in it. The second it was mentioned, I got so excited.

It wasn’t because I finally was going to see my disease on screen. It gets screen time all the time.

I was excited because I could not wait to see how they screwed it up.

In this particular episode, the diabetic character was a dog. And a dumb dog at that.

He had wandered off and fallen down a fifteen-foot storm drain. When his owner finally finds him, the team of geniuses is already working on saving him. She informs them that the dog has diabetes. The stakes have just been raised.

Being the geniuses that they are, the first question they ask is when was his last insulin shot.

Twelve hours ago. And the music swells. The stakes have just been raised. The dog must be rescued in the next fifteen minutes or he will die.

Wait.

What?

Most likely the dog is running off a long-acting insulin, which means, even if it stopped working exactly twelve hours after injection–which it doesn’t– the poor dog’s blood sugar would slowly begin to climb after twelve hours.

It certainly wouldn’t pass out and die exactly at the twelve-hour mark. The dog could probably survive quite a few days without insulin. Sure, he’d feel pretty crappy, and maybe do a little long-term damage, but he’d recover once he got back on track with his shots.

One more example of how people who are looking for a cool plot twist grab for the diabetes card and throw in their misconceptions of what it means to have diabetes.

I have yet to see a character with diabetes who isn’t a day-player. Who has diabetes, but not because it will make a kidnapping even more dramatic, or being a multi-personality doctor have strange events in the operating room.

To have a group of people on screen who have lives and interests and desires and also diabetes, to see the different ways personalities interact with the management of diabetes, to have the jokes that we can all tell each other finally up on the screen would be incredible.

So instead of just complaining about how “they” just don’t get it or ever do it right, I decided to do better.

A Bad Case… is an original comedy series about four friends. It is not some PC, educational crap about fighting stereotypes and bringing a message of hope and happiness to the world. It is a dark comedy about when diabetes goes all wrong. It is purely for entertainment value and laughs and will be told in six episodes of five to seven minutes each.

I would love to have this series made by people with diabetes. There’s something about being in the trenches together that makes it ok to tell these kinds of jokes. We go through it. Our lives are shaken by it. We are the only ones who can really get away with making fun of ourselves.

If this sounds like something you would love to help make a reality, I am currently looking for a cast and a few select crew positions.

If you have ever wanted to be in front of the camera, or maybe behind it with a cast full of people with diabetes producing the reality of what life is like for us in a seriously funny way, I want to hear from you.

If you have that one friend who is hilarious and you have told them a million times they need to get into a show, I want to hear from you. And them.

If you have zero acting ability and no experience with a camera, but you can hold a pole above your head for a few hours while watching an amazing team put together something that has never been done before, drop me a line.

And if you have been working in Hollywood for years, but haven’t had the pleasure of playing someone with diabetes like you, (yeah, I’m talking to you Derek, Austin, and Jennifer) reach out.

And if your best trait is your ability to sit behind a screen and binge watch shows for hours while Tweeting and Snapchatting and Instagramming all your friends, we need you, too, to get the word out and to enjoy the show. Feel free to drop me a line and tell me you’re out there, too, waiting to see a version of yourself on your phone.

A project like this needs a community to make it happen and I tend to think we have one of the best communities out there. Here’s your chance to prove me right.

For more info on how to join the cast or crew and on the production details, go to SeaPeptide.com/ABadCase


Awesome – thank you, Erin!

THE BETES Organization

Image of Rick Phillips

Today I’m sharing a post from Rick about THE BETES Organization. Their mission is to help you feel better about the hard stuff, and they help people, families, and caregivers understand the meanings of chronic illness in their lives through a unique, playful, and un-scary method. Also, sock-puppets. 🙂


When Scott and I talked about writing this guest blog about ‘the BETES‘, he didn’t have to invite me twice. It’s such a thrill because ‘the BETES’ means a great deal to me and I hope it will come to mean a great deal to you as well.

The BETES Organization (thebetes.org)

A few months ago I wrote a blog post about my encounter with ‘The BETES’ Organization. I hope you’ll read it as an introduction to this post (here’s the link again). If you do you will find that I was able to visualize what diabetes looks like to me. I found that sometimes diabetes is docile other times it rages. Based on the response to that blog post, I believe my feelings about diabetes are more common than not.The BETES Organization Logo

People who engage in a BETES program find an active way to confront the emotional hurt of diabetes. After we participate, we are left with a tool to begin that confrontation. Those of us (both young and not so young) can use that tool and the ongoing support of The BETES experience to complement existing diabetes education efforts led by doctors, diabetes educators, mental health professionals, and most importantly by you and me – the people with diabetes.

Socks

Marina Tsaplina

Founder – Marina Tsaplina

Diabetes is often like a monster hiding under the bed. It gets worse the longer one chooses not to confront it. I liken it to socks under the bed. When my sons were young I had to chase monsters that hid under their bed. Invariably those monsters turned out to be socks. But as every parent knows those sock monsters are very real for our children until they are found and confronted. So too are the emotions that go along with diabetes. Emotions related to diabetes are always evolving as they expand and contract. But no matter how small the concern might be, it has been my experience that they always come back unless we develop the emotional resilience to overcome and keep them at bay. ‘The BETES’ Organization helps people with diabetes develop the resilience to handle the emotional impact of diabetes.

When my wife Sheryl and I chose to support ‘The BETES’ Organization with our money and time it was with the hope that we would help people with diabetes and our wonderful type 3’s confront the emotional impact of our shared disease. As a former monster chaser in my son’s rooms, I know that getting the first sock hiding under their bed is just a start. In fact it seemed for a while like I had to chase a sock out from under the bed almost every night until my sons found the courage to manage their own monsters.

Now of course both of my sons are expert sock chasers for their children. They have learned to not let monsters get out of hand. They can do this because their mom and I helped them learn to confront them.

Marina of The BETES at The Clara Barton Rainbow Club Day Camp

 

My Diabetic Monster

‘The BETES’ Organization helps us to confront our diabetic monsters. Yes these monsters are very real. Even as an experienced monster hunter for my sons, I was still incapable of confronting my own diabetic monster. It took much help from trained therapists and my family but today I have the resilience to confront that monster when it rears its ugly head. My own journey to resilience includes the questions posed when I encountered ‘The BETES’. The experience was cathartic; it gave me a chance to share with words and images what diabetes looks like. My wife said those words offered her a viable understanding of what diabetes means to me and as a result to her.

THE BETES Organization - Health Care is a Human Story

Please consider contributing to ‘The BETES’ because your financial support will make it possible for us to launch programs that will help build emotional resilience to confront and understand their disease. With your help our immediate goal is to provide ‘The BETES’ program to 10 diabetic camps in North America this summer. Today we need your financial support to deliver ‘The BETES’ uniquely engaging and powerful programs to the campers, the parents, and the camp counselors across the nation to facilitate a program of empowerment, community, and connection that fosters a path of true joy.

Even small contributions go a very long way. Help us confront the monster. And take it from an experienced monster chaser: when we act together we can put the emotional side of diabetes in its place.

You can make a tax deductible donation to ‘The BETES’ here:
https://www.fracturedatlas.org/site/fiscal/profile?id=11075


Thank you, Rick! Learn more about Marina and some of the wonderful work she and The BETES Organization is doing with this quick video:

Guest Post: Rick Phillips – Diagnosis & Disney

Image of Rick Phillips

Rick Phillips

First, let me extend a thank you to Scott for allowing me to borrow this space. It is a privilege to be asked to fill in with a blog post while he is busy working. I normally blog at TuDiabetes.org and lately I have opened a blogging effort at CreakyJoints.org focusing on issues that are intertwined between Rheumatoid Arthritis and Type 1 Diabetes. As a person who is ‘blessed’ (I use that term loosely) with both conditions, I am looking forward to exploring  the intersection of the diseases.  Since I am hopeful that Scott will allow me to blog in the future (editors note: of course!), I thought I would tell you my diabetes diagnosis story. I hope you find my story meaningful (I know it is meaningful to me and perhaps you will get a chuckle)


Traveling South

A young Rick Phillips (not really...) :-)

A young Rick Phillips (not really…) 🙂

To set the stages please understand these events all occurred in June of 1974. I was 16 years old and thinking a lot about what young men think of at the age of 16. I mean studying of course (I am sure that is what you were thinking about when you were 16 correct?).

In addition I was also thinking of going to Disney World for the first time. In 1974 that was a pretty big deal. Unlike today when families go as a matter of course; in 1974 it was a special trip.

So we piled in the car (all 3 of us I was an only child) and started the drive from Indiana to Orlando. Saying piled means I stretched out in the back seat of an Oldsmobile Delta 88 the size of a battleship and treated it like my living room.

Image of an Oldsmobile Delta '88

The Green Delta ’88

On the drive south my Dad was very interested in me driving. I had recently obtained an Indiana Beginners Permit and my Dad decided I needed to practice driving at high speed on the Interstate.

Given that I had never driven on an Interstate, it seemed like a really good idea to my Dad so he insisted I keep up with traffic (meaning going 95 MPH). I was a kid steering a green Delta ’88 rocket with the three of us and all our meaningful possessions (minus my 200 record albums) down the road to Florida.

Suggesting that perhaps rush hour through Louisville was not a good place for an inexperienced driver only made my Father more resolved to make me do it.  By the time I got through Louisville I was absolutely terrified, I had been lost 4 times and my Dad was yelling at my incompetence.

Mom could not see so well so she sat in the back reassuring my Dad I knew how to drive. Saying I could drive was a point I disagreed with her about. What I knew was that going 95 MPH with only a Beginner Permit through Tennessee was a really bad idea. The drive took 2 days and my Dad claimed he was exhausted and he wanted to leave immediately to beat traffic on the way home.

For as long I as I could remember, my Dad had been trying to beat traffic. He refused to go places because of traffic. We left places early to beat traffic. We even got into traffic to beat traffic.  Once in Detroit he went to Sarnia ON to Windsor ON to beat traffic at the Detroit Border crossing (a detour of 226 miles one way).

Disney World

Walt Disney World Resort

Paradise, right?

Then the big day arrived and we finally got to Walt Disney World. I was cautioned before going in the park entrance not to ask for anything because our money was tight (it wasn’t but that was the customary caution from my Dad upon entering most anywhere).

Once inside the park and about midday on the first of 3 planned days, I started drinking. Well to put it more accurately I started my new project which was the only travel blog devoted to the drink stands and men’s rooms in the Magic Kingdom.

I know you may think it an exaggeration but I was spending so much time at the men’s room that I was actually thinking of how to organize lines. That was even odder because there were no lines. As far as the drink stand, the guys in the Tomorrow Land concessions offered me free refills.

As such, I gave them 4 stars in the planned visitors guide to Disney World.

After the first day my parents knew there was something wrong and with my mother being a type 1 Diabetic she suspected I was developing Diabetes. Mid-day of day two I took my first urine test.

By the end of the day my parents decided it was time to break off the vacation and get home as soon as possible. On day 3 we went to the Gulf Coast to visit a restaurant my mom wanted to try (I still find  it difficult to believe that with a sick kid you would take a day to go to a restaurant).

On day 4 in Florida the car was turned north and we were retracing our path toward home. Then two days later we arrived home and the next day I found myself in the hospital receiving insulin.

Hospital

On my first day in the hospital the hospital staff brought me the infamous orange, I ate it. I was really hungry and that orange looked so good. The same thing occurred on day 2 and day 3.

Each day the ward nurse would come to my room with my insulin and ask if I had practiced injections. I would truthfully answer no and she would go get me an orange and a new syringe with saline I would wait until she left, peel it, eat it and dispose of the evidence and the syringe elsewhere on the floor.

On day 4 of my hospital stay she no longer asked if I had practiced. She brought the needle and said the day had arrived to demonstrate what I had learned. I gave my first injection and of course now (for the past 12 years) I wear a pump so I no longer give injections. But almost every day since that morning in the hospital I have thought of that nurse and the frown on her face.

Knowing I had not practiced and waiting for me to cry she gave me the needle; so I set my jaw and stuck it in. She looked disappointed that I did it. I think in her world making non-compliant teenagers suffer was fun.

Moral of the story

Of course my story has numerous themes. First, when you are really hungry those hospital oranges taste pretty good. I was really hungry. The angry nurse be damned, never leave a hungry diabetic in the room with an orange by his self.

In total, I have visited Disney World 4 times. The second time I lost the car and searched for 2 hours in the Epcot Center Parking lot, finding it at 2 AM. My children, wife and Disney World employees were not amused.

The second time the Hotel had a fire alarm and everyone had to leave their rooms at about 1 AM. Apparently the power had gone out when the alarm went off and I was left searching in the darkness for my insulin, low coverage items and Glucometer.

The third time I stayed at the Contemporary Hotel but never visited the park.

On the fourth visit, things went just fine but of course I was always on my guard for a pending disaster.

The overarching theme of my story is that Disney World is not always the happiest place on earth. Further proof is that I have met three people who all became ill at Disney Parks and that illness turned into diabetes (one in California, One in Disneyland France and of course myself).

Together we have decided that Disney Parks may not be our best place for our vacation.

Next time I am going to Universal Studios.

Disneyland Sign


Thank you, Rick! That was a fun story! I had a big grin on my face many times as I read your tale!

It’s an honor to share your diagnosis story here, and I’m happy to have you back anytime you’d like. 

Guest Post: The DREAM Trust

I was recently contacted by Lucy, a British journalist working to spread the word about the state of diabetes abroad, especially in third world countries.  Please, read on to hear Lucy’s story.


“I wish I had AIDS, not diabetes” (girl, aged eight)

For those living with diabetes, daily life can have its challenges. When my cousin was diagnosed, aged just 5 years old, I watched the anguish my aunt and uncle went through, and are still going through, as they face the ups and downs of living with the condition.

However, it is hard to believe that 89 years after the discovery of insulin, children are still dying for lack of this life-saving drug in the developing world- and nobody knows about it.

This week there will be a UN Summit in New York to discuss Non-Communicable Diseases (cancer, diabetes and other chronic illness) in the developing world. Currently, only 2% of international aid goes towards treating them, and they are killing in their thousands.

It is this crucial international event that gave me the opportunity to see first-hand how life is for Type 1 diabetics in the developing world. I am a British journalist, and by chance, whilst on assignment I attended a seminar by the International Diabetes Federation: NCD’s, a Silent Killer. I was staggered to discover that 250,000 children are struggling to live with Type 1 diabetes in the developing world, and it is estimated that at least another 250,000 die undiagnosed.

After securing funding, I traveled to Nagpur, India’s city of oranges, to make a radio documentary- ‘The Doctor who Dreamed‘. Poverty overwhelms this industrial city, and Type 1 diabetes can be a fatal diagnosis. There is no National Health Service and unlike AIDS and Malaria medication, insulin is not freely available. The cost of insulin can cost more than one third of a family’s monthly income, and too often the logic of poverty overcomes the logic of life.

Endocrinologist Dr Sharad Pendsey established the DREAM Trust after witnessing the deaths of two young girls, whose families could no longer afford the insulin to keep them alive. I can only describe him as a ‘Father Christmas’ figure to these children, whose eyes light up when they talk about him and the clinic. He has saved the lives of around 600 children using money from his own private Type 2 clinic, and through international fundraising.

Picture of two young girls, Manisha and Shrutika, age eight, living with diabetes

Manisha & Shrutika, age eight

Without the help of the clinic, these children face an unimaginable struggle just to survive. I will share the story of Seema, whose father was an alcoholic. Her mother sobbed as she told me how she used to break one piece of bread before four children, and how her daughter went without insulin for half the month, because nobody was there to help them. Then there was Jyoti, abandoned at the doors of an orphanage, because her parents were not prepared to support her. In many cases the children face deep stigma, with others refusing to share their glasses or plates for fear of contracting diabetes themselves.

Women with the condition are worthless in a still male-dominated society, considered to be a financial burden. When 15 year old Alka developed the condition, the villagers thought that she was pregnant because her belly swelled. When her husband discovered she was diabetic, he abandoned her, leaving her to a life of shame.

Dr Pendsey’s clinic not only provides the children with medical care and counseling to overcome the obstacles they face, but also offers educational scholarships to the most needy, allowing them to escape the cycle of poverty. One patient, for me, summarizes the hope that has grown in this modest clinic. Manda dreamed of being a nurse, to support her condition and her poor and illiterate parents. Knowing that the medical school may refuse her entry on account of her diabetes, Dr Pendsey helped her switch her father’s urine for her own during the admission tests. She kept her illness a secret, rushing to the clinic at times of need and returning to class the next morning. She is now a government nurse; one of the most respected women in her society, and supporting herself and others with the condition. Dr Pendsey is proud of her- she is a DREAM girl.

It is hard for me to summarize in so few words the depth of the issues the children face, and the admiration I have for Dr Pendsey and his staff. Without their support, and those of international donors, these children would simply not be alive.

Image of Dr. Pendsey sitting at his desk at his clinic

Dr. Pendsey has saved around 600 children with type 1 diabetes

Whilst on the grand scale the UN Summit discusses the future of these and others, I want to help on the small scale. Dr Pendsey receives modest funding from individual overseas donors, taking no administration charge, and the money going directly to the children. Just $315 (£200) pays for all the medical care and insulin for a child for one year, and the donor can interact with the child through letters and drawings. $60 (£40) is the cost of a year’s schooling, and $3 (£2) buys a pot to keep insulin cool in the child’s home, in the absence of a refrigerator. I would implore anyone to give, however little, because it goes so far out there. Next time someone thinks of doing a sponsored run, or a bake-sale, make the DREAM Trust the charity of choice and help save lives.

Most of all I want to raise awareness of the plight of these children, and others like them worldwide. As a journalist, this is one small thing I can do to help.

********

The full documentary, ‘The Doctor who Dreamed’ can be heard at: http://soundcloud.com/luluinlondon/the-doctor-who-dreamed/s-fpA05

There is more information about the DREAM Trust at www.dreamtrust.org.

Please contact me, Lucy Laycock, at llaycock0703 ‘at’ googlemail.com for more information about helping the DREAM Trust or donations.


Disclaimer: I have not personally investigated the DREAM Trust, it’s sources, it’s partners, nor the validity of their fundraising efforts.  However, I wanted to get this guest post out in time for the UN Summit, starting tomorrow morning.  Please DO YOUR OWN RESEARCH before deciding to send any money anywhere.  I am not responsible for anything beyond helping to spread the word.

Guest Post at The Life of a Diabetic

Chris Stocker writes a great blog called “Life of a Diabetic“, where he treats us with wonderful glimpses of his experiences living with type 1 diabetes.

This week Chris is featuring guest posts by a bunch of folks, and I am honored to be one of the guest bloggers.  Chris – thank you!

Resignation Versus Resolve“, my guest post, was published there today.  I would love to hear what you think about it.

Yesterday’s guest post was from Lorraine, Caleb’s supermom, who blogs over at “This Is Caleb…“, and it was all about the support she and her family have found through the Diabetes Online Community (DOC).  She even says, in writing, that I am not a stalker.

I love Lorraine, Caleb, and David (Caleb’s dad).  They rock.  I mean, how could you not love a goofy kid like this?!  Rock on Caleb, rock on!

(I had a really hard time deciding between this picture, and the one above…see what I mean?)