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.

Food

Food is a somewhat controversial topic in the type 1 community. Some people greatly restrict carb intake, others don't. We are in the 'don't' camp. We just make sure we are eating healthy meals with lots of veggies (those have carbs too, by the way) and count every carb! The insulin must match the carbs. Even then, it's no guarantee they will stay in range. Diabetes really has no rhyme or reason, nor does it play by any rules. The same exact meal can produce different results on different days. Jason and Seth tend to react similar to the same foods, but not always. It hurts my logical brain some days. Ok, most days.

Here's an example of a meal. Keep in mind Jason is 6'9" and Seth is a 6'6"ish growing teenager, so it's more food than most people eat.

When there is a special occasion or event, Seth eats cake, ice cream etc. Just like every other kid. His pancreas doesn't work, and it's not his fault.He just has to inject the insulin that other kids secrete naturally. Jason watches sweets more carefully, as all adults really should, but he isn't super restrictive either. It's such a change for him from the days he thought he was type 2! More difficult in most ways, easier in a few.

There are some food that are more off-limits. Regular soda and juice, especially at a restaurant, are almost impossible to calculate so they drink diet soda. We also keep sugar free jello cups on hand all the time. Otherwise, regular food. We just have to count Every. Single. Carb. I'll write more later about the calculating process and also how we order in restaurants.

Something that will blow your mind...a banana has about the same number of carbs as a cupcake. From an insulin standpoint, they are equal. Obviously they aren't from a health standpoint, but still. It's crazy that they need to inject the same amount of insulin for healthy fruit as a cupcake. But that's the way it is.

Ok, I think that's all I have for today. More next time! Until then, we will keep doing our best 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.