Ignorance is Bliss

In the days leading up to Valentine's Day, there have been some "jokes" making their way around the internet. Jokes like this:

These "jokes" aren't funny, they are ignorant and mean.  The people that make these jokes are blissfully unaware of what life is like with diabetes (either type).  They seem to think it's ok to poke fun, because the people brought it on themselves.  Guess what?  They didn't.  Yes, even type 2 diabetes.  

Am I saying that diabetes is completely off limits for jokes?  Nope.  We joke about it all the time in our house.  Humor is one way to deal with the overwhelming nature of this disease.  But there is a line and most people that are unaffected by diabetes have no clue where that line is.  I'll tell you where the line is - anything that blames the PWD for their disease.

Even though ignorance is bliss, it is only bliss to those that are ignorant.  It can be incredibly painful for those of us who are all too aware of this disease and its potential for devastation. 

For the record, several people in the awesome DOC replied to the person who posted this and he tweeted an apology.  It seems I may have helped educate and raise awareness. One person at a time.

Here's how some other wonderful bloggers have responded to these "jokes," in case you are interested. 

http://www.sweetlyvoiced.com/2014/02/snickers.html

http://whatsyourtypeoperationawareness.com/2014/02/10/what-about-bob/

http://inspiredbyisabella.com/teachablemoments/

Quarterly checkup

Seth had his quarterly checkup this week.  We knew his A1C would be up just a little bit, because it was crazy low last time. His endo even said that, "It's probably lower than mine." (Endo is non-d.)   He may see that range again one day, but I think it's pretty unrealistic to expect a teenager to stay in that range consistently. Or any PWD, for that matter.  It did indeed go up a little bit, but still was excellent. He doesn't mind at all for people to know what his A1C is, but I know that's a touchy subject in the DOC.  He wouldn't want to make anyone feel bad about their own efforts/results.  I'm so proud of him.  He works hard, and consistently, to keep his numbers in range as much as possible.  Does he have highs and lows?  Yup. Big swings throughout the day sometimes?  Yup again.  Does he make poor food choices?  Absolutely.  He is a teenager!  But he takes it all very seriously in general and makes decisions accordingly.  Some decisions are proactive (careful carb counting, pre-injecting insulin before meals, taking exercise into account) and some are reactive (treating highs and lows, again taking activity, active insulin, and other factors into account).

It's been almost a year and a half since diagnosis.  From the beginning, we have tried to remember to fit diabetes into life, not life into diabetes.  Some days are harder than others, but I feel like it is getting more routine.  I don't think it's easier, exactly.  Just more routine.  Part of life that isn't going away.  It makes me proud and sad at the same time.

He also passed his driving test and got his license on the same day as his checkup. We finally got rid of that awful picture that was taken about a week before his diagnosis.  Then he went on his first date with him driving the next day.  It was a nerve-wracking couple of days for this mom!  But like everything else he tackles, he did it well.  Diabetes isn't going to stop him or even slow him down very much.  He only slows down to test and treat as needed.  Otherwise, he is going to do what other kids his age are doing.  KDA every single day!

Do I do too much?

A comment on another blog recently made me wonder if I do too much for my guys.  After all, they are both capable of doing all of their own care.  I know little kids need much more hands-on care, but do my guys need the things I do for them?

Here are the things that I CHOOSE to do to help them out, and hopefully avoid diabetes burnout:

1) Ordering and organizing supplies. I am almost obsessive about this.  I order as soon as I can and have quite a stockpile of most things.  Just in case.  And I have everything in labeled drawers.

2) Calculating carbs. I weigh, measure, look up, SWAG, etc.  Seth has dubbed me the SWAG master overlord.  I take it as a compliment. I also have the carb info for every restaurant we visit on my phone. I make a post-it note for endless tacos/enchiladas. My mom calculates all the holiday meals.

3) Inserting Dexcom sensors. I do this for 2 reasons.....because they don't want to, and because they prefer them on the backs of their arms. Pretty difficult to get both hands behind your arm.

4) Night checks as needed.  I'll set an alarm if a problem is suspected, but mostly we just rely on Dex to alert us.

5) Looking for patterns and helping with dosing decisions. Seth needs more help with this.  Instead of doing it FOR him, we do it together.

6) Checking their d bags and making sure they are ready to go on the next venture outside the house. I empty trash, check insulin pens, pen needles, test strips, low supplies.

7) Research, research, research.  I try to learn everything I can to help them.

My conclusion?  Absolutely I should be doing these things for them!  Type 1 diabetes is a 24-7-365 disease.  They are the ones that poke themselves multiple times a day, wear Dexcoms on their bodies to help stay safe, feel the effects of their blood sugar going up or down. It can't consume our lives, but it does have to be considered at all times. Life with diabetes is NOT normal, but D-parents do everything we can to help it be as normal as possible.  So our kids can be kids.

And to the person who commented on the other blog:  Yes, type 1 diabetes is a big deal.  Yes, it can and does kill.  And no, we don't need to relax.  As soon as you drop your guard, that's when d attacks.  Not that I will let it consume us, but we must always be mindful, always be on guard.

Diaversary #2

I started this over 2 weeks ago, but just couldn't finish it because of final exams at school, Christmas, life, etc.  Diaversary #2 was Dec. 14.

For the 2nd time in less than 4 months,  we are "celebrating" the day of diagnosis with type 1 diabetes.  We aren't celebrating the diagnosis,  but rather the fact that my awesome husband has KDA for a year. Now, if you are a regular reader, you will remember that Jason was diagnosed as a type 2 several years ago, but never had any semblance of control.  A1C numbers were always too high, doctors were always telling him to "do better, get more exercise," etc.  After Seth was diagnosed with type 1, I found information that led me to believe Jason was misdiagnosed.  His doctor agreed, and we ventured into the land of 2 type 1 diabetics in the house.  In that year, his A1C has been cut almost in HALF!!

It has been a tough year, but a good one.  Father and son have been a great support for each other. They remind/encourage each other to test.  They have little "contests" to see who is closer to 100, or who is closer to their Dex number.  They understand each other like no one else in the family can.  I hate they have that bond, but I'm glad at the same time.  Does that make any sense at all??

Learning a New Language

Being diagnosed (or having a loved one diagnosed) with type 1 diabetes means learning a new language.  I have learned so many words and phrases in the past year or so!  Some of them are words/phrases you may have heard before, but they have a totally different meaning in the type 1 world.

High has nothing to do with drugs. You may hear the parent/significant other of a type 1 person say things in public like, "You better be high, acting like that" or "He's been high after school every day this week." In these cases, high means high blood sugar, and often results in unwanted behaviors.

Low is not about mood. Well, at least not primarily. It's low blood sugar, which can quickly turn into an emergency situation.  You may hear parents say things like, "Eat this candy right now, mister!" 

D bag has nothing to do with a person's character.  It's the bag of diabetes supplies that must be carried everywhere.

Shooting up also has nothing to do with drugs.  It's about injecting insulin.

PWD/CWD are acronyms for person with diabetes/child with diabetes. Many people are opposed to using the term "diabetic" as a noun.

T1P is a type 1 parent. Frequently found conversing with other T1P in the DOC.

DOC stands for Diabetes Online Community. When I first heard of it, I thought it was one website. I quickly learned it is a network of PWD and parents of CWD on many different social media platforms.  Such an important part of our lives!

Basal is not a misspelled herb. For those that pump, it is the background insulin that is constantly flowing. For those on MDI, it is one or 2 daily shots of a long-lasting insulin like Lantus or Levemir. 

Bolus is the insulin taken with meals, whether by pump or injection. This is a fast-acting insulin, such as Humalog, Novalog, or Apidra.

MDI is multiple daily injections. Most PWD on MDI take 4 shots per day, on average. Additional injections are needed for corrections, extra snacks, or if the PWD splits their Lantus or Levemir dose.

DKA is one of the scariest acronyms of all. Diabetic Ketoacidosis is a very serious condition where the PWD's body is producing large amounts of ketones. Seth was in DKA when he was diagnosed.  We hope never to experience that again!

I:C (ICR) is yet another part of daily calculations for  PWD. It's the insulin to carb ratio used every time a bite of food enters their mouth. That is, 1 unit of insulin is needed for how many grams of carbs.  Examples:  Seth needs 1 unit of insulin for every 10 grams of carbs at lunch, so his ICR is 1:10. Different times of day have different I:C. Often just called ratio.

SWAG in the diabetes world has nothing to do with bling or one's attitude.  It's an acronym for estimating carbs,  like at a buffet or potluck. Stands for Scientific Wild A$$ Guess. 

Poker is not a card game. It's what many PWD call their lancet, or lancing device, used to poke a tiny hole in the finger for testing blood sugar.

Pulling an all-nighter is not what it was in college.  It is usually needed when blood sugar numbers are erratic due to illness or other unknown factors. Frequent blood sugar tests are needed, resulting in the PWD or parent of CWD getting little to no sleep.

Check/Test/Stick are all different ways to refer to using a poker to make the finger bleed in order to test blood sugar level. This is usually done a minimum of 4 times per day, plus any time a low or high is suspected. Many people avoid using the word test, because it's not a test you pass or fail.  Numbers aren't good or bad, they are just in range or out of range.  The numbers tell the PWD what to do next.

Low treatment is basically candy. Pure sugar/candy/juice is needed to raise blood sugar when it dips too low. There is no "healthy" alternative.  Only sugar will raise blood sugar; other ingredients like fiber, fat, or protein can slow this down.

Correction is extra insulin, aside from the basal or bolus insulin that has been calculated. A correction is needed when blood sugar is too high. There is a calculation for this as well, called correction factor or insulin sensitivity favtor (ISF).

Ketones are a scary thing to PWD and parents of CWD. They are produced when the body isn't using the glucose in the blood. The body starts breaking down fat in an attempt to nourish the cells, and ketones are a dangerous by product of that process. DKA can happen quickly,  resulting in a hospital stay and possibly death.

DIB (Dead in Bed) is a VERY rare, but very scary, occurrence. No one knows exactly why it happens, but extremely low blood sugar while sleeping is thought to cause a fatal heart arrhythmia.  Even though it is extremely rare, PWD and parents of CWD are very well aware that it can happen.  Frequent night checks or the use of a CGM (or both) are ways to help avoid DIB.

CGM/Dex is a life changing device for type 1 families. A Continuous Glucose Monitor does just what it says, it continually monitors blood glucose via a tiny sensor placed just under the skin. Dexcom G4 is the kind of CGM we use. It's not perfect,  but we sleep better at night with Dex in the house. It is expensive,  but covered by insurance and well worth the money to keep my PWDs safe.

DAD also has a different meaning to those in the type 1 community. It refers to a diabetes alert dog, not a father. Although, I did read an article about a father that could smell his CWD's highs/lows. These highly trained dogs will alert PWD and CWD to high or low blood sugars. They are very expensive,  but invaluable to those families that have them.

KDA is a phrase that I adapted from a friend's long battle with cancer. KCA was a type of rally cry that we would text her or post on her Facebook. KDA stands for Kick Diabetes' A$$, and my guys do that every single day!

Pre-bolus backfire

Diabetes doesn't like to play by the rules. Even when you do everything right, it doesn't always work the way you think it should.  This weekend was a perfect example of this. 

Friday night, I made a soup that has pasta in it. Typically for my guys,  pasta needs insulin after eating.  This time, however, injecting after he finished eating resulted in double arrows up on Dexcom for Jason. He didn't go super high, just higher than he likes and got there pretty fast. He was back down in range by bedtime, so everything was ok.

Saturday for lunch, we had leftovers of the soup. Since the timing was off Friday night, both guys decided to inject 15-20 minutes before they ate, which they try to do with most meals. We were guessing there wasn't enough fat in the soup to cause a delayed rise in blood sugar like most pasta. So they tested (both around 110), calculated their carbs, injected, and waited about 15 minutes to eat. Halfway through lunch, Jason's Dexcom started buzzing low, and falling. Seth had just pulled his sensor that morning and was waiting until after lunch for a new one, but he said he felt low too. It wasn't long before they were both shaking and sweating.  I sat there not knowing what to do because THEY WERE EATING!!  How the heck do you go low WHILE you're eating?? And since when do both of them have the same reaction to the same meal??

Sorry for the poor quality.  Dexcom receivers are hard to photograph!
This is from a different low...I was way too flustered to take a pic during that fiasco!

As I was contemplating what to do (quick carbs?  Glucagon?), I noticed I was shaking and a little sweaty myself. It only took a few minutes for them to start feeling better as the carbs from their lunch kicked in, but those few minutes seemed like a eternity to me. It may be a while before we have that soup again, but next time we'll try something different. Inject right before eating,  maybe? It's just trial and error, really. But eating shouldn't be that hard, and the error is just unacceptable.  We are learning every day, but there is so much left to learn for us to KDA.

A day of diabetes

This past Sunday, I took on an ambitious project for Diabetes Awareness Month.  Every time something happened that was diabetes related, I posted about it on Facebook.  It was a fairly uneventful day, diabetes-wise, until bedtime....

10:34 am For Diabetes Awareness Month, today I am going to attempt to post everything that happens in our house today that is diabetes related. Already this morning, I have checked both Dexcom receivers, both pretty good numbers. Jason just got up, Seth is still sleeping. Now would be a good time to hide me from your newsfeed if you don't want a constant stream of info 

10:42 am I'm out of bed now. Seth's Dex says 136 and steady. A little higher than we like, but he had dinner a little late last night. Hard to calculate needed corrections at bedtime. Jason is eating cheese since we slept late. Too late for real breakfast or lunch numbers will be high. BS check (finger stick). Meter says 124, Dex says 123.

11:46 am Lunch time for Jason! Another finger stick blood sugar check. Dex says 143, meter says 130. Lunch has been weighed and measured, carbs calculated, insulin injected. Seth is still asleep, so I checked his Dex. 113 and steady. He'll need to get up and eat soon.

12:29 pm Seth is still sleeping. He had a really long day yesterday doing mission work with his class from church. Dex says 105 and is asking for a calibration. I'll let him sleep just a few more minutes. Without Dex as a guide, I'd have gotten him up a while ago.

1:18 pm Possible problem with Jason's Dex sensor. No trend arrow. Hopefully it will sort itself out soon. Seth is awake, his Dex says 97. It's still asking for calibration. Hard to get a sleepy teenager out of bed.

1:37 pm Seth is finally up. Dex says 84, finger stick check says 127. Dex is calibrated again. Now it's time for lunch. Time to weigh and measure the food, calculate carbs, and inject insulin.

1:42 pm Jason's Dex has corrected itself. 171 with a steady arrow. Not bad for after lunch.

3:19 pm Quick Dex check. Jason is slowly coming down from lunch. He has been napping this afternoon so it has been slow to come back down. Seth is 100 and diagonal arrow down. He may need a snack soon.

3:46 pm Well, I was right. Seth is now 67 and still a diagonal down arrow. Skittles in. Recheck in a few minutes.

3:55 pm Dex says 61 and steady, but finger stick check shows 75. He's coming back up, Dex is just a little slow sometimes. He wanted some juice just to be sure, so we may be dealing with a high later. We always listen to his body over Dex or the meter. Now a little protein to help it stay up.

4:03 pm Jason and I are headed out to run a few errands now that Seth is back in range. Gotta check the D bag and make sure we have everything. Insulin, pen needles, meter and test strips, Glucagon, and candy for lows. All check, so we're off!

4:20 pm 2 boxes of these bars for bedtime snacks. They are the perfect combo of carbs and protein.

5:26 pm Standing in line waiting to check out, so a quick peek at Dex. 133 and steady.

6:16 pm Foods I didn't buy, at least not often or in bulk, before diabetes entered our life. Now they are staples.

6:51 pm Supper is ready. Finger stick checks, blood sugars are in range so no corrections needed with dinner. We're having a meal we make often, so no major calculations tonight. They just have to measure out their portions, calculate their total carbs for the meal, and inject their insulin.

7:50 pm Jason didn't give his insulin soon enough in relation to his supper, so now Dex is showing arrow up (blood sugar rising quickly). Seth is actually showing a higher number on his Dex, but only a diagonal arrow up (rising but not too fast).

8:02 Apparently the Dex transmitter can't send signal through the dog. She is between the transmitter and receiver, and signal has been lost to the receiver. Ugh.

8:23 pm Connection has been restored, and Dex is buzzing that he has reached his high alert (210). Hopefully he will start coming down again soon.

9:44 pm Even though we eat pasta fairly often, it's difficult to dose for correctly. Both guys are coming back down slowly according to Dex, but may need corrections at bedtime.

11:30 pm Bedtime blood sugar check #1: Jason. 140, which is a great number for bedtime and no correction from dinner is needed. We did better than I thought. Only 1 injection tonight, the long-lasting background insulin Lantus. He's eating one of those yummy protein bars to help keep him stable overnight. Dex has become our best friend, especially overnight, alerting us to possible problems. I definitely sleep better with Dex x 2 in the house.

11:39 pm Bedtime check #2: Seth. 144, another great bedtime number. The 2 of them are almost never that close at any point during the day. Lantus (long-lasting background insulin) injection and a yummy protein bar. Dex will alert for Seth as well, if there is a potential problem.

12:10 am And now it's time for me to go to bed. If you have read my posts today, thank you. It was a pretty routine day, diabetes-wise. My purpose was to give you a glimpse of what a day is like for us. I lumped some things together in single posts just to keep it from being a truly steady stream. You see, it never ends, never lets up, never sleeps. We do this every day because we really have no choice. It doesn't stop us, it merely slows us down at times. Until there's a cure, this is our life.

12:22 am Well, I just thought it was time for bed. Jason's Dex just alerted that he is below 70.

12:25 am Finger stick confirms 57. Looks like we'll be up just a bit longer. Skittles work your magic!

12:33 am Jason: Oh, I can feel it. I'm dizzy.

               Me: Well sit down!

12:43 am 15 minutes later he's come up all the way to 61! At this rate, it's gonna be a long night. Trying a Quick Stick now.

1:16 am Dex says 85, but it's usually a little slow to respond. Finger stick says 77. Hmmm, let's try one more treatment...more Skittles.

1:37 am 108 finally. Another snack with some carbs and some fat/protein to keep that number up overnight. A little bit of ice cream should do the trick!

2:00 am Dex is finally catching up. 99 with a diagonal up arrow. Now to sleep for a little while. Good night!

9:45 am (Monday) Last night, I posted that yesterday was a fairly normal diabetes day. I thought I was done for the day, headed for bed. But diabetes has a way of changing our plans. For reasons unknown, Jason's blood sugar started dropping and didn't want to come back up. You may have noticed that I continued posting into the night. That is not a typical night, thankfully, but we never know when it might happen or why. This morning, I'm happy to report that wake up blood sugar numbers were excellent. Thanks again for taking a glimpse into our daily life yesterday.

It was really interesting and exhausting to write it all down, but I really think it helped raise awareness of what we deal with every day.