Normal Is Relative

Last night was pod change night. I called Charlotte into the kitchen, and she slouched in and said, "I just don't feel like dealing with this right now, Mom." And...I totally got it.
My alarm goes off, and I hit snooze and go back to sleep. The dryer beeps, but I leave it for a few hours days. It's time to start dinner, but I decide we can eat a half hour late tonight. It's Saturday...a good yard day...my yard still looks like the set of a horror film. If I don't feel like dealing with something, I don't have to. But Charlotte can't put it off. When it's pod change night, it's pod change night. She has to deal with it even if she doesn't feel like it at that moment.
We hugged and talked about it, and in the end all was well better. Most days she doesn't care, but at that time in that moment, it was too much. I'm surprised it's not too much more often. After all, she's only six, but I credit that to her being diagnosed at 20 months. This is her normal - the only normal she remembers, and how often do kids not like to deal with their normal? Most kids are cool with their normal the majority of the time, and she is no different.
Last night is already forgotten, and the next pod change will be uneventful, I'm sure. After all, normal is relative, and this is hers...until there is a cure.

Looking Back

This summer marks the fifth anniversary of Charlotte's diagnosis. Five years.
On the one hand, I look back and think, "Wow, it's been five years already." A lot has changed in these five years. Ken and I are pretty good at managing this disease, and for better or worse, Charlotte has gotten used to it. She is gaining more knowledge and understanding about being a healthy diabetic, and is now old enough to go to diabetes camp in the summer. Blood sugar checks, insulin doses, and 2am alarms are all part of our normal. When Charlotte was diagnosed, we were so overwhelmed that the thought of reaching any semblance of normal again seemed impossible, but five short years later, here we are, managing diabetes like the rock stars we are.
On the other hand, I look ahead and think, "Wow, it's only been five years." I have to be careful of this thought. If I entertain it too much, I get depressed. Charlotte has been dealing with this for five years, and unless there is a cure, she will be dealing with it for another 70+ years. Looking forward seems endless, like Atlas holding up the world. It's overwhelming, suffocating, too much to deal with. There are moments when this thought wins, and I cannot breathe.
That is why those of us in the diabetic community try to take it one day at a time. If I think about how every single night I am not going to get more than four hours of sleep at a time, I start to lose my grip on sane. If I think about my daughter starting college and me lying awake, worrying about diabetes on top of all the other things college parents worry about, I start to lose my grip on sane. If I think about trying to shop for a wedding dress which hides an insulin pump, I start to lose my grip on sane. So today is today, and tomorrow is tomorrow, and maybe, just maybe, the day after that will be the day she isn't sick anymore. There is where my sane lives.

The craft show is in two weeks.
July 13
St. Stephen UMC in Arlington
1800 W. Randol Mill Rd.
9am - 3pm

Thanks, Hugs, and All Things Sappy

Ladies and gentlemen ... we have done it. We have filled each and every spot for the craft show. Would it be too sappy to tell you that my heart is full? That I am so thankful and appreciative of all our vendors? That I could hug each one of you? Because that is all true.

So thank you, vendors, for your time, your talents, and your donation to fund research for a cure for diabetes.

And thank to all of you who are planning to come; who are telling friends, family, and neighbors; who will make a donation at the door no matter what that amount may be. You also get hugs from my full-hearted self.

One day type 1 diabetics won't need insulin or shots or alert dogs or glucometers or pumps or CGMs because they won't be type 1 diabetics anymore. And on that day, you can tell people that you helped make that possible. That you were a part of something bigger than big. That you are someone's hero.

Can you imagine? A world without diabetics but full of heroes.

Awesome.

Most adorable. Diabetics. Ever.

24 Hours, 18 Pokes

For today's activity, you are going to need a rubber band to wear around your wrist because for the next 24 hours, you have type 1 diabetes. The rubber band is going to simulate your finger pokes and your insulin injections. Each time you have to check your blood sugar or give yourself a shot, you will need to snap yourself with the rubber band.

8:00am: blood sugar check (pop) - 105 ... perfect
             Breakfast - 57 carbohydrates ... you'll need insulin (pop)

10:00am: you're feeling shaky; check your blood sugar (pop) ... your blood sugar is 65; too low!!
                Hungry or not, you need to ingest 15 carbohydrates.

10:30am: recheck blood sugar (pop) - 100 ... perfect!!

12:00pm: blood sugar check (pop) - 190; too high, you rebounded after you low earlier ... you'll need extra insulin with your lunch
                Lunch - 73 carbs ... you'll need insulin (pop)

2:00pm: you feel off; check your blood sugar (pop) ... it's 204, still too high!! More insulin (pop)

3:00pm: recheck blood sugar (pop) - 160 ... it's coming down

5:30pm: blood sugar check (pop) - 98 ... perfect
               Dinner - a lean 30 carbs, but you'll still need insulin (pop)

6:00pm: you decided to eat dessert ... 40 carbs, so you'll need more insulin (pop)

8:15pm: you feel shaky; check your blood sugar (pop) - 103 ... perfect

9:00pm: you still feel shaky; check your blood sugar (pop) - 71 ... too low!!
               Hungry or not, you will need to eat 15 carbohydrates

9:30pm: recheck blood sugar (pop) - 110 ... perfect!!

11:00pm: bedtime blood sugar check (pop) - 83 ... it's borderline, so you'll need to get up at 2am just to make sure you're okay

2:00am: blood sugar check (pop) - 65 ... too low!!
               Get out of bed, go to the kitchen, and ingest 15 carbohydrates.

2:30am (still awake): recheck blood sugar (pop) - 90 ... perfect!!

8:00am: breakfast ... time to start it all again!!

Something Quick

We are currently trying to find new ways to advertise for the show. Flyers and Facebook posts will only get you so far...

The above ad is intended for a playbill at a local theatre. Every little bit helps and if placing this ad will encourage even just 10 more people to come to the show, we have accomplished something.

You can help by spreading the word, marking your calendars, and joining us on July 13th. We have some wonderful vendors, who have amazing handmade creations for sale. Look for posts and links to some of them in the coming months.

It is going to be a great show!!!

Hero Status

For some reason I envisioned the artificial pancreas as being an internal thing: I thought they removed the pancreas and replaced it with technology.

I know. I'm weird. How would you load it with insulin? You wouldn't, that's how.

It's actually an external device.



It's a good thing I wasn't on the team working on this because I
would have screwed it up royally.

Right now it's going thorugh human trials. The continuous glucose monitor on the right monitors the blood sugar. It then communicates instructions to the insulin pump on the left, telling it to increase or decrease the insulin being delivered to the patient. This actually looks very similar to what many diabetics are wearing right now, but at this moment they don't have the whole communicating-together thing. A person still has to read the CGM and then make insulin adjustments on the pump.

But this is why we support JDRF. They funded the research which led to the development of the artificial pancreas, and they fund the research that is making the trials possible. And while we are still years away from this being a reality for any diabetic, we are also years from where we started: when diabetics "managed" thier disease by not eating sugar and had a 1-year life expectancy from diagnosis.

Help us support JDRF: share this blog, tell people about the show, and come yourself. That way on that day in the future, when you meet someone wearing an artificial pancreas, you can say, "I helped fund the research that made that possible." Trust me, you will be a hero.

It can't be just strep, can it?

Spring Break two years ago we took our two littles to the Houston area. We did Kemah, we did Galveston, and we did the Houston Children's museum, which henceforth shall be known as The Germ Pit.

Type 1 diabetes means that when you get sick, even with the common cold, you could potentially do it up big. Because type 1 is an autoimmune disease, a diabetic's immune system is already wacky. Add germs, and it gets interesting. Getting sick usually means high blood sugar readings and being on a ketone watch every time your kid has to pee. It's time consuming and exhausting, and its even more interesting that each time you get sick, the way the diabetic's body responds differently.

So back to our Spring Break. We went, we saw, we had a blast. On the drive home, Charlotte was complaining of her head and throat hurting. Not long after we got home, she vomited. Note that vomiting is not ideal for a diabetic. Getting rid of those sick-caused ketones requires two things: water and insulin. If diabetics can't hold down water, they are going to the ER for IV treatments. This is how, a few hours later, we found ourselves power walking into the ER with a super sick kid.

Side note...you mention "diabetes" and you get a fast pass to the head of the ER line. We do not wait...ever. That's how serious diabetes is.

It turned out Charlotte had strep throat. That's right...strep throat. She ended up in the ER because of strep throat. And just to add to the ridiculousness of it all was the fact that she had had strep about ten months prior to all this, and it was almost weird how normal she was. A sore throat, but no high fever, no high blood sugars, no ketones. Now months later, same diagnosis, we had a medical emergency on our hands. Why the difference? Because that's just what diabetes does.

Yeah ... this sucked!

Confused yet? Yeah, it's confusing. Diabetes is different for every person, and even within that one person, diabetes doesn't act the same from day to day...or sick day to sick day. It's enough to make a person crazy and willing to do anything for a cure for her kid...including co-hosting a craft show annually ... so her kid doesn't have to deal with it anymore.

And how does The Germ Pit fit into all this? There were germy kids everywhere that day. I am pretty sure that is where she picked it up...or it could have been at NASA...or at the Kemah Boardwalk. All those germ bags kids touching everything, spreading their sickness everywhere - ugh...we just can't go anywhere fun again. Ever.

Just kidding. We will go fun places. We just have to remember that she's a kid and she's gonna get sick. And yes, she may end up in the ER because she gets strep throat. But making her a Bubble Girl isn't the way we want her growing up. But it's nothing a little cure can't fix, so one of those soon would be nice.

The Experiment That Never Ends

We've all been in school. We've all had the group project science experiment or participated in the science fair. I mean, really, we've all seen the celery sticks in colored water and have planted lima beans under different colored Saran wrap...what will happen? Riveting, right?

Well, when your kiddo is a type 1 diabetic, you are always planning, revising, hypothesizing, questioning, and/or concluding a science experiment. The only difference is that you have to start over three days later. The best way to help monitor the craziness is with a log.

Here is an example:



Now I realize I could type this into a spreadsheet, but I gotta say handwriting it is so much easier.

You record information about blood sugar levels, food eaten (carbs), and insulin injected. Then you highlight blood sugar numbers that are not in the acceptable range.  Amy and I differ on our color choices. I do blue for high and pink for low blood sugars, and she does the opposite. There is no right or wrong way to do this--use green and yellow if you want. You just need to know what they mean.

From there you start looking for trends that happen over a couple days. If you notice the same issue (color) at the same time everyday, you need to make a change in the amount of insulin administered at meal times or the insulin given to keep blood sugars stable when not eating. A quick example ... see all those blue numbers at 2:00am (at the top of the chart)? Grayson is too high, so we need to adjust his insulin doses so he is in-range.

I don't want to get technical, but you get the picture. It's complicated...and inconsistent because your hypothesis of "If I make the lunch dose of insulin larger, then his blood sugar will go down by dinner," will need to be revised a few days later. The only consistent thing is the realization that no two days will be the same.

I think that is the greatest hurdle to understanding living with this disease. As much as we do know - T1s don't produce insulin (although some still do), insulin given through injection can help maintain good health, exercise can bring down blood sugar levels, adrineline can make blood sugar rise, along with carbs, growth hormones, sickness (but that can also make it drop), and, we cannot even make this up, the phases of the moon and the weather (Are you confused yet? That was us the entire first month after diagnosis.) - there is a lot we don't know/understand. You just have to be willing to make changes and realize that you are doing the best you can every day because it is not about you. It is about the kids. They are the ones who have to deal with this disease for the rest of their lives. While I will get to give this up, the science project will eventually be inherited by my son.

I wouldn't wish this type of action research on anyone, but I do wish that the awareness of the struggle was more widespread.

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