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.