The Blame Game - Diabetes Blog Week 2017

Blame is such a heavy word, and there is plenty to go around in the diabetes community.
Doctor blame patients for not being in "control." I have not experienced this with my doctor; he is great! But I read almost daily of someone whose doctor or cde has shamed them in some way for their management (or lack thereof, in the healthcare providers mind). Might this be why people give up? Maybe some grace and gentle guidance would be more effective than blame and shame?
Patients blame themselves for "mistakes."  We all make them. How could we not? Our pancreases don't make insulin, so every bite of food we eat must be calculated and matched with insulin. Food labels can be off as much as 20%. Glucose meters can be off as much as 20%. Activity, stress levels, illness, and many other things can affect glucose levels and insulin absorption. We make mistakes. We have to treat ourselves with kindness and grace, and move on.
Parents blame themselves when their child with diabetes has high or low numbers.  Imagine having a young child, perhaps young enough that they don't speak yet. Now imagine that you have to guess how much food that child will eat at EVERY meal and snack. If they don't eat it all, their blood sugar goes low. If they eat more, they need more insulin. It's a constant balancing act. Mistakes happen. Parents need to be kind to themselves as well. 
Parents also tend to blame themselves for passing on the genes that cause the disease. I know my mom even mentioned that when I was diagnosed with type 1 at age 45. I stopped her in her tracks....blame does no good.
Society blames us for our disease. This is a big one. Whether the patient has type 1 or 2, or any other variant, we are NOT to blame for our disease. There are strong genetic factors involved, and the experts don't even fully understand it.
One of the saddest and most infuriating cases of blame are when my fellow type 1 folks throw our type 2 friends under the bus. It's not right, and it's not fair. Like it or not, we are all in this diabetes game together. We must be kind to other. Without kindness and compassion, we start treating each other as less than human.

Expect the Unexpected - Diabetes Blog Week 2017

Wow, this is almost the motto in our diabetes life!
Probably the most unexpected thing was my diagnosis at age 45....the 3rd diagnosis in our house in less than 4 years.
In everyday life, we have learned to expect the unexpected. We try to prepare for all possibilities. We go through the checklist before we leave the house....insulin, pen needles, snacks, meter, test strips. We're ready for the highs and lows.
Probably the hardest thing to manage is the fact that our 3 bodies sometimes react very differently to the same foods and situations. We are each learning our bodies and how they respond to different things. It's a life long learning process.
Some of the things that keep it fun with so much diabetes in the house is watching for matching blood sugar numbers on our Dexcoms. This is the closest to triplets we've ever been! Maybe one day I'll get that unexpected surprise!

Message Monday - 2016 Diabetes Blog Week Day 1

I haven't written much lately. Life with 3 type 1 diabetics in the house can be a little overwhelming. I'm hoping that writing for Diabetes Blog Week will get me back in the swing of writing. I have lots to say about my diagnosis!

Today's prompt is:What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

I think my most important message I have is that it can happen to anyone. You really never know. When my younger son was diagnosed in August of 2012 at the age of 16, I never dreamed that my husband would be diagnosed 4 months later. After that, I had the occasional thought of my older son being diagnosed, but didn't dwell on it much. Much to my surprise, I was diagnosed in March of this year. Blindsided? Absolutely. 

While I know the mechanics of taking care of diabetes  (testing, injecting, carb counting, etc) being able to do so in my own body is a new kind of adjustment for me. It's been an adjustment for my husband, my kids, and my parents as well.  I think we're all dealing pretty well, and I'm learning how my body responds to the many variables that affect blood sugar. I will absolutely KDA.

Diabetes Awareness and Thankfulness

November is diabetes awareness month.  It is also Thanksgiving month, so many people do 30 days of thankfulness.  For 3 years, I've tried to resolve those 2 things in my mind. Sure, I'm thankful for insulin, glucose meters, Dexcom, and all those other things that make this disease more manageable than it has ever been.  But can I find something about the disease itself to be thankful for?  That's where I've struggled.  How can you be thankful for a chronic life-threatening illness?

Then I heard this song:

It describes so perfectly what life has been like the last 3 years.  We are so thankful every day for another day.  It would be poor manners to tell someone else that they aren't promised another day, but I can tell myself!

Our family has always valued our time together, but since diagnosis that time has been even more precious.  We've taken a couple of weekend trips as a family and even took a vacation last year, something we hadn't done in a very long time. We all worked together this past summer.  Jason and I teach at the same school, and the boys attend the same college. They even have a class together.  So yes, we are embracing living life and loving each other every day, more than ever before.  There aren't many things to be thankful for with diabetes, but I think living life to the fullest every single day is a pretty great thing!

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/

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. 

Another 6 months

Six months ago today, our lives changed yet again. As I've written before, Jason had struggled as a type 2 diabetic for several years. Despite diet and exercise,  his blood sugar numbers were always terrible. High A1C results at every dr appointment. I think he tried every type 2 drug on the market,  and some that are no longer on the market. All to no avail. He endured a foot ulcer that almost resulted in the loss of a toe. The last thing I noticed last summer and fall was a loss of muscle tone despite swimming almost daily (including a 5k at the end of the summer). I figured it was just because we are in our 40s, getting older....

Then Seth was diagnosed with type 1 diabetes. Through my research to learn all I could to help him, I discovered that maybe Jason had been misdiagnosed.  The symptoms fit, so he asked his doctor. His doctor concluded that yes, he had been misdiagnosed.  Scrap everything and start over....he is type 1, not type 2. The change in how he felt was almost instant. At his 3 month check up, his A1C was the lowest it has ever been, and all other lab values were NORMAL!!

Now that he is feeling better and his blood sugar numbers are much better, we are beginning to realize just how sick he was. He has energy now, and muscle tone has returned. He is able to continue doing the things he loves, like training lifeguards. All part of our life of KDA.

Wordless Wednesday

National Day of Hope

9 minutes of sleep

The best sleep I get is from 6:51 to 7 every morning. Jason kisses me good bye every morning around 6:45, and then Seth's alarm goes off at 6:51, and he hits snooze. At that time I know both are ok and I can sleep peacefully until my alarm goes off at 7. 9 minutes of peaceful, unworried sleep every morning. I never thought I would be  thankful for 9 minutes of sleep. Of course, I get more sleep than that, but none quite like it. So if I look really tired some days, now you know why. 9 minutes is not much, but it's what gets me through some days so I can help my guys KDA.

A drawer full of cheese

Cheese has become a staple in our house the last 7 months. Virtually no carbs, it makes a perfect snack. A week or so ago, I bought cheese at Costco. Lots of cheese. It should last about a month.

A whole drawer in the fridge is dedicated to cheese, right below the drawer of insulin. 

They eat cheese plain, but they have also come up with some other ideas for low carb snacks.  One of the favorites is chipless nachos.  Sliced cheese with a jalapeno slice, baked at 400 for about 7 minutes. Yum! The inspiration came from this blog.

Cheese, meat, eggs, sugar free jello....those are about the only carb-free foods, so we keep plenty of all of those on hand.  Veggies are mostly low carb, but even some veggies with dip require an injection, depending on the veggie, the dip, and the amount.  All fruits require an injection. So I try to keep plenty of carb free snacks on hand.  Growing boys need lots of food, and shouldn't always have to take a shot to eat it.  Carb free snacks help my guys KDA every day!

Sick again

The pukes hit our house again today. I went down to the nurse's office for something this morning and Seth was in there.

Me: What's wrong?
Seth: I threw up.
Me: Want me to call your brother to come get you?
Seth: Yes, please.

After I called Josh and signed Seth out in the office, I texted Jason the grocery list. We already had ramen, chicken noodle soup, sugar free popsicles, etc. Here's the rest of the sick day list:

Yep, when a type 1 is puking, you need regular and diet of everything. You never know if they'll go low or high!

The puking has stopped, but I know there are lots of extra blood sugar checks in the next day or 2, along with some ketone checks. Hopefully we can avoid the wicked lows he experienced last time he had a tummy bug. Insulin will probably have to be reduced for a few days.  Who knows for sure??? Nothing with d is normal. Nothing. But we fight on and KDA!

Take that, diabetes!

This weekend, Seth competed in Destination Imagination for the 7th year in a row. His blood  sugar stayed in range during competition, but was slightly high that evening. The stress and activity of competing could have caused his numbers to go high or low.  Neither would have been a real surprise.  But in range? What a blessing. He was able to focus on his competition and not worry about his numbers.

His team placed 3rd in a cutthroat category. I'm so proud on so many different levels.  He KDA every day!

6 months

6 months ago today, we were in Children's ICU. I wasn't sure anything in life would ever be ok again. 6 months later, I'm still not 100% sure, but it's getting better. Here's what I've learned in the past 6 months:

1. Doctors make mistakes. I knew this already,  but now I know it on a very personal level.  We went from a diagnosis of mono to the ICU in DKA in less than 48 hours.  No hard feelings, doctors are human and they make mistakes just like the rest of us. But there has GOT to be a push for doctors to do a simple blood or urine test for kids that come in with those symptoms....tired, dehydrated, weight loss, thirsty. A simple test would have started my child on insulin 2 days earlier.

2. I CAN do this. God gives me strength to fight this battle every day.

3. My child is amazing.  Another thing I already knew, but now I know it on a whole new level. He calculates carbs and insulin at every meal and snack,  pokes his fingers to test his blood 4 or more times a day, injects insulin at least 4 times a day, and pays attention to his body every second in case he starts feeling low. He carries a bag of supplies everywhere he goes. He is my hero.

At least 4 finger sticks per day.

4. There are some really amazing people in this world. In the last 6 months I have been introduced to the DOC (diabetes online community).  Facebook, Twitter,  forums,  blogs, etc. These people ROCK! They have helped me learn so much. I had no clue that I could meet people online and feel so CONNECTED! They are my daily support in all things diabetes. 

5. Carb counting. A can of Rotel has 10 grams of carbs. An average sandwich has 25.  Tortilla chips are about 2 grams of carbs each. That's just the beginning of all the numbers I have floating around in my head, and I know more are to come.

6. New vocabulary.  Basal, bolus, insulin-carb ratio, glucagon, DKA to name a few.  Plus some others that have taken on new meaning - high, low, low treatment, d bag (gotta keep that sense of humor!), shots, pokes, giving the finger, shooting up. On and on that list goes.

7. My son can still enjoy all the activities he has always enjoyed. He needs to test his blood sugar more often during some activities, but no activities are off limits!

Lead snare for marching band

8. No foods are off limits either, much to the shock of many people. Obviously, he can't eat sugar all day every day. No one should do that. A healthy diet with occasional treats is the plan he follows.

9. Candy isn't bad. Sometimes it's a lifesaver. Literally. Skittles are his favorite low treatment.

10.  Stomach viruses can cause carb absorption problems.  Very little insulin was needed for DAYS after the virus was over.

11. There is no "right" amount of insulin. The body needs what it needs.  The dosage amounts are different for every person, and can even be different for the same person on different days.  There is no rhyme or reason to it.

12. The expected life span of a type 1 diabetic is equal (or near equal) their non-diabetic peers. Complications can be prevented or at least delayed by keeping blood sugar in range as much as possible.

13. There is no such thing as stability or control. We can simply learn how to manage it.

14. Other illnesses are no more likely than they were before, but the effects of those illnesses can be greatly magnified. Some illnesses that can normally be treated at home can put a type 1 in the hospital.

15. There is much left to learn so that we can KDA every day.  Until a cure is found, the ultimate way to KDA!  

Fear

Fear is one of those things type 1 parents don't talk about much. Especially not outside the type 1 circle. But, I said I was going to try to give insight into our life. So here goes.

We do not let fear run our lives, but it is always there. Every minute of every day, lurking in the background.  Is high blood sugar causing permanent damage? Will he go low when he is alone, or asleep, or out with friends and not come back up? How will it affect his relationships? College? Jobs? The list goes on and on.

This morning,  for example,  fear overtook me for a few moments. If you know me well, you know I am not at all a morning person. The snooze button is my friend, or enemy, depending on your point of view. Every morning, my alarm goes off about the same time as Seth's.  When he hits snooze, I relax a little and doze for 9 more minutes. Or more. Well, this morning, he didn't hit snooze. I bolted out of bed. I don't remember my feet hitting the floor until I was in his room. He didn't want to wake up! As I was deciding what to do next, Jason showed up wondering why I was running across the house before 7 am. He hadn't left for work yet. He got Seth's meter, and by then Seth was sort of awake. Tested blood sugar. 149. What a beautiful number! He was just sleeping because he was tired and didn't actually have to get up. You know, being a normal teenager. He just forgot to turn his alarm off for this morning.  But because of D, nothing will ever be normal again.

My heart finally returned to normal rhythm. All is well in the world again. For now. It never truly goes away, it just fades to the background for short periods of time. Then it rears its ugly head when you least expect it. 

KDA isn't just a motto,  it's our life. Every day is a fight, and we fight with all we have  in us every day. Until a cure is found, we continue to KDA.

Hard to put into words.

Words have not come easy lately. It has been about 3 weeks since I blogged. I can't decide if I have no words or too many. Probably too many, clogging up my brain so I can't arrange them in a coherent way. I mean, 2 diagnoses in less than 4 months is kinda overwhelming by anyone's standards. Anyway, my awesome friend Jen encouraged me to continue spreading awareness, saying she has learned more real, practical information from me than she did in pharmacy school. So I will try to organize the jumble of words and emotions in my head in order to continue helping people understand this horrible, invisible disease just a little bit better.  More awareness means a better chance we will KDA.

Thanksgiving prep

Our preparations for Thanksgiving have been a little different this year. Ok, a LOT different. Mom made the menu as usual; she will be doing most of the cooking, with me making Grandmother's dressing. But this year we have to think seriously about carbs, so we sat down to do the calculating. The conversation went a little like this:

Mom: How much in the turkey and ham?
Me: They average 1 per serving.
Mom: Ok, let's work on the pies. One cup of flour for the crust, and we don't have to count the butter, right?
Me: Right. So a cup of flour has 88, plus the filling (more adding). So that's 62.5 per slice if we cut it into 8 slices. How about the broccoli and rice? (We add up the total carbs for the recipe.) But how many servings?
Mom: We'll just have to measure that once we get it made.
Me : Yep, we have the total, we can divide on Thursday.

On and on like this for each recipe. We have carb counts for every dish that will be on the table Thursday. Some are already figured per serving, some we will have to finish once it is cooked. Because of our advanced planning and awesome math skills, Seth will be able to enjoy a reasonably normal Thanksgiving dinner. Lots of food, lots of insulin. Is it worth it? Absolutely!

After the calculating, we rewarded ourselves with banana pudding. Yum!

How important is math?

A student asked me the other day if I really used math outside of school. I answered that yes I do, every day. She wanted to know how, so I explained that my son has an illness that requires us to calculate the carbs in every bite of food he eats, and to calculate his medicine to match the food. Her response? "I would die then." I assured her that if her life depended on it, she would learn math quickly. She didn't seem so sure.
We had similar thing happen in our last diabetes education class. The lady sitting behind us was beside herself trying to calculate her son's insulin to carb ratio. She was very frustrated, to say the least. Jason turned around to help her, ever the teacher. He patiently explained it to her again, but when we left that day, I wasn't convinced she knew how to do it. Thankfully, I heard her say she had a friend that could help her. And she will do what she needs to do in order to care for her child. That's what good parents do. We do it so that our kids can live a reasonably normal life, and do things they love, like this:

Diabetes Awareness Month

November is Diabetes Awareness Month. Didn't know that? I didn't either, until recently, even though I have been living with a type 2 for about 9 years. When type 1 entered our lives unexpectedly, everything changed. I have always been aware of the research being done to find a cure, and I have always been hopeful that a cure would be found. But now it's personal, very personal.
There are a couple of things you can do to participate:
1) Be a type 1 for a day. Through the Juvenile Diabetes Research Foundation (JDRF), you can experience a tiny bit of what we go through each day. If you are game, sign up to receive text messages for 24 hours. You will receive text messages throughout the day to let you know what a type 1 experiences, minus the finger sticks and injections, in a day. Text T1D4ADAY to 63566. You will receive a confirmation text that completes your registration. Or visit
http://www.jdrf.org/index.cfm?page_id=117942 for more information.
2) The Big Blue Test. Check your blood sugar, do a little exercise, check your blood sugar again, then log the results at http://www.bigbluetest.org/. The goal is 20,000 tests by November 14, World Diabetes Day. The organization will donate diabetes supplies to people in need.

Do it for these 2 that I love so very much.

One day, we will KDA.