You're Welcome, I Know the Cure for Diabetes

My grandmother suffered from back problems to the point of needing several surgeries to stop the pain. While visiting her family in East Texas once, she was told of this magical, miracle cure for back problems that was so outlandish it prompted her to interrupt and ask where the information came from. "Why Jo Ann, it was in this month's Enquirer. Didn't you see it?"

I heard this story several times as a kid, and I always go back to that one line whenever a well-meaning person in my life tells me all about a cure for diabetes they read about. I want to throw something sarcastic back - something like, "Oh my goodness! Here we are having spent thousands of dollars paying a specialist to treat her when all we had to do was google 'diabetes cure' to solve all our problems. Thank you, helpful person. You have literally saved us." But I don't. Instead I take a deep breath and remind the person that as of yet a cure for type 1 diabetes hasn't been found because I realize that most people know nothing about diabetes ... much like myself before August 30, 2008.

If you click here, here, and here, you will see cures for diabetes. The first one even guarantees a cure in four days. These are the cures people bring to me, but these "cures" have one thing in common ... they are for type 2 diabetes, not type 1. With only 5% of the diabetes population suffering from type 1 diabetes, it is understandable that most of the information out there in the general population relates to type 2 diabetes, and the fact is the two diseases are completely different.

Can you believe we did nothing to cause our kid's diabetes?

Type 2 diabetes is when the pancreas is producing insulin, but not enough to effectively keep up with the sugars in the blood stream. Poor diet, lack of exercise, an unhealthy lifestyle, and genetics all play a part in causing this insulin deficiency. Because the causes of the disease are sometimes created by the patient, the disease can sometimes (it's not a guarantee, mind you) be reversed by major lifestyle changes. This accounts for the "cures" that are out there relating mostly to diet.

Type 1 diabetes is an autoimmune disease. Something somewhere sometime caused the immune system to go haywire and start treating the beta cells in the pancreas like enemies of the state. The beta cell's one and only job is to produce a hormone:insulin. Since the cells are being systematically wiped out, no insulin. No insulin means the sugars in the body cannot be released from the blood stream to be burned as fuel. There is no cure for this.

Let me be perfectly clear ... there. is. NO. cure.

Period.

There are treatments, but that's all they are. If we stopped the treatments, our daughter would slip into a coma and die. The treatment for a type 1 diabetic is insulin delivered into body fat through injections. Some people can manage their type 2 diabetes with pills, but this is not an option for a type 1 diabetic. It is either multiple daily injections or an insulin pump, both which involve needles.

In type 1, exercise is a tool to help control blood sugar, but adding it to your routine doesn't cure the disease.

In type 1, a good diet is a tool to help control blood sugar, but adding it to your routine doesn't cure the disease.

So thank you, really and honestly, for trying to help with your cinnamon and your Paleo diet, but these are not cures for a type 1. I promise that when there is a cure, I will know long before you, and you can find me alternately screaming and pumping the air with my fist and on my knees sobbing with relief. That is a guarantee you can count on.

How the Craft Show Came to Be

Being teachers time is a limited commodity for us, but we wanted to start something now that we each had a kid with type 1. But what? It couldn't be during the school year, and it needed to be something to help generate awareness, but also fun. This is the uninspiring dialogue that led to the creation of the Stop the Shots Craft Show:

SCENE: Sunday morning in November 2010, sitting in a "Sunday School Class"--really it is Amy and me in the gym of our church talking...shhh

Jaime: We should do something to raise money for JDRF.

Amy: Yes! What? 

Jaime: hmm. I don't know. I've always wanted to do a craft show.

Amy: That sounds fun! We could do it during the summer when we have more time. July?

Jaime: Great! Next July we will hold a craft show here at the church.

Amy: Yay!

(high five)

END SCENE

Nail bitter, huh? Really we did talk about it in greater depth and even typed out a letter to send out to potential vendors. After that we talked with people that had experience with such things, like our friend Sharon, who is a Director with Mary Kay, created a Facebook page, and started sending out the letter. The rest, they say, is history. 

We are in our third year. We still have a lot to learn, especially when it comes to advertising, but we have met some wonderful vendors. Many have been with us since that first year. We can't wait to introduce you to them when we get closer to the show. And, we have raised funds for JDRF. 

The show is a ton of work and effort, but it is nothing to what our kids endure every day. Finger pricks, counting carbs, and injecting insulin are the daily routine. I wish it wasn't our reality, but with every dollar we raise, we are helping researchers take one step closer to stopping the shots.

Share this post and save the date for the 3rd annual Stop the Shots Craft Show, July 13, 2013

Juvenile Diabetes Research Foundation

There are several organizations that bring awareness to and raise funds for diabetes research, so a good question may be why do we pour our heart, soul, and sanity into raising money for the Juvenile Diabetes Research Foundation (JDRF). 

First, there is a JDRF chapter along with a Walk to Cure Diabetes right here in Cowtown. And after doing this for several years, we have come to love the people in the Ft. Worth office. These are people who do not make a ton of cash who throw themselves into raising money to improve the lives of our kiddos. They are passionate about curing diabetes, and for that we are super grateful.

Second, JDRF is the largest charitable supporter of type 1 diabetes research. Again, this directly benefits our kiddos, so we will continue to do what we can to help them research ways to make technology work for diabetics.

But don't take our word for it. From the JDRF website (www.jdrf.org): 

     JDRF is the leading global organization focused on type 1 diabetes (T1D) research. Driven by               passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is now the largest charitable supporter of T1D research. The goal of JDRF research is to improve the lives of all people affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D. JDRF collaborates with a wide spectrum of partners who share this goal.

     Since its founding in 1970, JDRF has awarded more than $1.6 billion to diabetes research. Past JDRF efforts have helped to significantly advance the care of people with this disease, and have expanded the critical scientific understanding of T1D. JDRF will not rest until T1D is fully conquered. More than 80 percent of JDRF's expenditures directly support research and research-related education.

Not convinced yet? How about I throw a celebrity at you? Actor Kevin Kline is the parent of a Type 1 diabetic. He also pours his heart and soul into helping JDRF be a successful player in the curing diabetes games. In this CNN interview, he talks about what it's like to be the parent of a diabetic, but he, along with a representative from JDRF, talks about JDRF's goals. Give it a watch, would you please? 

http://www.youtube.com/watch?v=KMv_BEzs7i4

See? That, ladies and gentlemen, is why we work so hard to raise money for JDRF, and we hope that you will consider supporting them, too. They are, to put it mildly, good people.

Why We Do This Part II

My son was sick. Really sick. And I didn't know it or...maybe I just didn't want to believe it. This picture was taken just a few days before we were sent to the hospital to have him diagnosed as a Type 1 Diabetic.
 

Grayson (left) and Simon (dirty face)

I knew something was wrong. I don't remember exactly when, but Grayson began drinking anything and everything like he was being timed at a frat party. Milk. Soda. Water. Lemonade. He had the glass drained before I could shut the refrigerator door. Then the bathroom trips were just as frequent, and he was having trouble holding it long enough to make it to the toilet. He would, but I could tell it hurt him to make the effort.

I knew enough about diabetes to recognize these symptoms--Charlotte had the same symptoms just a few years before. I remember trying to stay calm about it, nonchalant even. Yes, Grayson was showing the symptoms, but since no one in a medical coat had given me a definitive diagnosis, I could stay in control.

I made the appointment for Grayson's well-check, and October 12, 2010 my husband (who normally didn't go to these appointments anymore because our kids were healthy), Grayson, and I went to the doctor's office.  As soon as the nurse started the exam, I let her know about my concerns. She asked Grayson if he needed to go to bathroom, of course he did. He always had to go to the bathroom. She got her sample. Next, she drew some blood and said they would test it with their glucose meter. We waited.

Less than 5 minutes later, the doctor came. I knew. She looked at me and said, "His blood sugar is 436 and he has ketones." My husband, having not spent a lot of time with Charlotte, didn't register the new vocabulary, but I knew. Grayson was indeed diabetic.

"But, that doesn't mean for sure that he is diabetic, right?" I asked the doctor. She pulled me into a hug, patted my back, and held me tight.

"Yes. It does mean exactly that. You need to get in your car and go to Cook's. We will call them now and let them know you are coming."

 
After that, I can't even tell you all the things that happened. It is a blur of people, doctors, visitors, reading, learning, counting, and shots. Giving my son a shot just so he could eat. If you thought making your kid choke down "the pink stuff" when they had an ear infection was bad, I'd give anything to have Grayson be able to take the antibiotic for 14 days and cure this stupid disease.

Thankfully, and by the grace of God, we had so much support as we learned to tackle the daily grind of measuring food, calculating insulin doses, and helping Grayson cope. Grayson had, not only Charlotte, but his best friend at school, who was diagnosed in 1st grade. Grayson became her friend two months before he was diagnosed because he recognized E's insulin pump. "That's for a diabetic, like Charlotte."

This disease is so unrelenting.

 

This disease is so exhausting.

 

This disease is so unpredictable.

 

This disease is so stupid, but it can be managed. Not cured...yet. The Juvenile Diabetes Research Foundation is one of the foremost organizations working to help find better ways to manage, prevent, and ultimately cure this disease. Everything we do to organize this craft show is for one purpose and one purpose only: to raise funds that will move JDRF and their researchers a step closer to stopping the shots. 

Why We Do This Part I

The thing about diabetes is it changes your life completely and forever. In the time it took the doctor to say "diabetes," Ken and I went from being parents to a pancreas. We carry the weight of our daughter's survival on our shoulders every hour of every day.

Toward the end of the summer of 2008, Charlotte started showing signs of the disease. It started with a persistent diaper rash, progressing to an increase in thirst and wet diapers. Eventually, she was vomiting sporadically. By the day of her diagnosis, she was exhaling like she had run a marathon. What we didn't know then was that all of these symptoms came from her body trying to get the excess sugar out of her body. When my mom called to tell me that she had passed out after a bath, we took her to the ER. It was August 30 ... Charlotte was 20-moths-old.

The triage nurse smelled a fruity smell on her breath, and it is all a blur from there. I remember three things very clearly. First, her blood sugar was so high that their meters couldn't read it. They had to draw blood to get a reading. The acceptable high is 120, and Charlotte was at 713. Second, the nurses had a terrible time starting an IV because Charlotte was so dehydrated. It was torture. Third, we were at a hospital with no pediatric unit, and I naively thought we would drive her to Cook Children's. The doctor gently explained that she was too sick and needed to be monitored, so an ambulance came to get her. They called it a Teddy Bear Transport. It was still  an ambulance.

Charlotte spent just under 24 hours in the ICU with an IV giving her insulin. Once they moved her to a room, we had to learn how to give her insulin injections. We adopted a hug-and-pin method to hold her still because she would thrash and scream and beg us not to. Everyday the doctor and Certified Diabetes Educator would come by and give us a little more information and teach us a little more about being a pancreas.

After five days, they sent us home. Coming home with a diabetic is kind of like coming home with a newborn for the first time. You leave the hospital, go home, and just kind of stand there thinking, "Well, now what do we do?" When  you left for the ER, everything was different, everything was normal. Now you have a new routine, you are up several times every night monitoring blood sugar, and you don't trust anyone else to watch her and keep her safe, so you don't go out a lot.

It has been just over four years since our lives changed. While, sadly, diabetes has become "normal" for us, it's still hard. We will never stop worrying about her, but we have to balance that worry with allowing her to be a kid. It is exhausting to always be counting carbs and checking blood sugar. It is exhausting to get up in the middle of the night to check her. It is a time-suck of epic proportions, and there are days when I look into the future and see nothing but diabetes and cry at the endlessness of it all.

But thanks to new technologies and new ways of treating the disease, Charlotte is living a healthy, almost normal life, going to public school, playing with friends, and spending the night with her grandparents. These technologies and treatments were found in part because of the funding the Juvenile Diabetes Research Foundation gives to diabetes research. Because of the work they are doing, we raise funds for JDRF through a team. Charlotte's Angels was established by my friend, Aaryn Lamb, within days of Charlotte's diagnosis. The Stop the Shots Craft Show came into being as another way to fund-raise for JDRF, and it was conceived after my college roommate's son, Grayson, was also diagnosed with diabetes.

But that's a story for Part II...

New Year, New Show

It's a new year, which means our reprieve from the crazy that is the show has ended. It's time, people. It's time for us to send out applications for booth spaces (Coming soon!). It's time to buy a plethora of painter's tape to mark off booth spaces. It's time to start advertising. It's time to start getting excited again. It's craft show time!

But this isn't just about us. How can it be? We are only two people, you know? This is also about you ... yes, you! It's time for you to:

• get crafting
• post it on Facebook ... once a week ... minimum
• harass encourage perfect strangers in JoAnn's/Hobby Lobby/Michael's who are buying their weight in faux flowers/fabric/hot glue/yarn to come

Additionally, we are looking for people to guest post on this blog. Experiences ... stories ... reasons you are a vendor ... reasons you always come and spend your money ... anything about the show, really. Email it to us at stoptheshotscraftshow@gmail.com and we'll gladly let you take up some of our space.

Lastly, mark it on your calendar ... July 13! 

Together we can Stop the Shots!

Jaime and Amy