No Time for Diabetes

There are days I wish I could put diabetes on the back burner, there is simply just no time in the day for everything. But unlike the laundry, I can't set it aside for a better time, nope it needs attention NOW, in fact Diabetes is a huge attention whore! Always poking it's face in where it doesn't belong, and at the most inappropriate moments, plus it's ALWAYS about D!

It may be the lack of sleep leading this post or just the fact that D is simply tiring in itself. With a family as large as ours, (In case you've forgotten we have 9 of us!) there is no dull moment. Quite honestly I go to bed tired as death, and wake up the same. I hardly sleep, and no not just because of D, because well simply with 7 kids someone always needs something at some time or another. There is always something going on, whether it's a doctors appointment, endo appointment, dentist appointment, PT appointment, Speech therapy for the twins, or Early headstart for the twins. There is just something always going on. And the one big thing always there is D. It's a constant 24/7 job that takes no breaks or vacation, quite honestly I wish I had it's energy, I would get soooo much done.

Endless finger pokes, carb counting up the wahzoo, site changes, fighting the doctors for prescriptions, fighting the pharmacy, fighting the insurance, sleepless nights, the uncertainty of it all.

But one thing stays certain in the mix, no matter the time, the loss of sleep it's worth it in the morning to see a bright, smiling, ALIVE face. (Although he has to work on his wake up time, usually it's the butt crack of dawn).....

Three Year Diaversary - What Three Years Can Do!

A lot can happen in 3 years.... In  years you go from thinking you have a healthy 6 year old little boy, to being told he has Type 1 diabetes, to watching him suffer in DKA unconscious all the while you think he is slipping away. Just when you think you are starting to learn the ins and outs of this new "Type 1 Diabetes World" he passes out from a low blood sugar and bumps his head, only to be rushed off once again via ambulance to Children's hospital. And when again you think you've got it covered he suffers the scariest seizure you've ever witnessed in front of you to be flown by helicopter back again to Children's hospital. This trip though was bittersweet, it was in April of 2010, and a new D mom like myself and I had connected on Facebook, and she helped keep me company while sitting in the hospital with Clifford and waiting for Chad to come. That mom has moved on to become family to me. (Diane, you know it's you ;) ). Moving forward from my initial contact with Diane, she helped to introduce me to many more wonderful people that knew what was going on, and we were welcomed into the DOC (Diabetic online community). If you are reading this and still are unsure what the signs and symptoms of type 1 diabetes are, take a look here, it could very well save someones life! Knowledge is power!

These events haven't even covered the first year of living with Diabetes for Clifford. These events both happened within 2-6 months of being dx'd. Finally though after that was all said and done, his doctors got his 'sliding scale' which I've come to detest figured out better. A sliding scale is basically to me a guess of how much insulin to give them based on their blood sugar at the time. It doesn't take into account the carbs they are eating, or anything. So as you can see it's basically just a 'start' into learning the diabetes lingo, and treatment plans, and honestly it sucked.

In three years, not only did we get handed a diabetes diagnosis, we found out we were expecting (at first we thought just one baby), then we moved, then found out surprise (it's two!). That first year of D is not something I'm proud of, but I tried my hardest and did what I was told to do, all the while suffering from morning sickness. Many times I gave injections, and tested blood sugar from the couch because well it just felt better there, instead of getting up and having the room spin around me.

Finally after questioning it over and over again, Clifford got to start "Carb Counting" in August of 2011. He was on that dreaded 'sliding scale' for a year and a half. I have to admit though as horrible as the sliding scale was we haven't had an a1c over 7.5%, except for Dx which was 10%) In fact in the last three years  ( 7.5%, 7.4%, 7.3%, 7.1%, 7%(twice), 6.9% , 6.8% (twice), 6.5%, 6.4% and 6.3%.  We moved forward into our carb counting journey with one goal in mind, pumping... I was told multiple times by those at Children's hospital that Clifford wouldn't get approved for a pump, his a1c was too 'good' and that injections were fine for him because he was doing 'good'. Well wouldn't it be better to move from doing 'good' to doing 'great'?? In fact that's exactly what happened after pumping, but we'll get there later. It took some time but I pushed for the pump, fought the insurance a bit, had an appeal, but low and behold in March of 2012 he started pumping (all paid for by the way and approved by the insurance) ;) . Within 3 months, just 3 months of pumping his a1c went from 7.0% down to 6.5%!! Then in September it was 6.3% and 6.4% in December. Before pumping the lowest we saw was 6.8% (which is rocking also btw, but as you can tell he went from 'good' to 'better').

It's been three years and he's gone from not knowing what to do, or how to care for himself to testing his own blood sugar 15 times a day (sometimes more, he's more obsessive about it than I am), to bolusing (giving insulin) for meals, counting carbs, correcting high numbers through the pump, and has even tried changing an infusion set.  Today's a day of celebration in that he's made it another year and lived it happy and healthy all while having Diabetes with him. As I said in 3 years a lot can happen!

KNOW the Signs

There is no reason that a child should die from un-diagnosed Type 1 diabetes. NO reason. But unfortunately, even with all the advancements in technology, and our better treatment options than that of what we had before, it's still happening, even today. Before Insulin what you see in the picture is what was happening. Children were dying from type 1 diabetes, because there simply was no treatment for it. They were put on starvation diets, to restrict from pretty much everything, and the outcome was a slow, painful death. Imagine the heart ache of their parents to witness them go through this.

Before and After Insulin (same child)

But NOW we have insulin, we have much better treatment methods, and we have more education then there was before. There should be no excuse for a child to die from a missed diagnosis. And with the increase of Type 1 diabetes cases being reported in children DAILY, it's important to recognize the signs and symptoms. I'm not going to lie, it was almost missed with Clifford, we almost lost him, because we didn't know the signs and symptoms, we simply thought he had the flu. I look back on it at times, now that I know the symptoms and wonder just how I could have missed it. But it happens. Let's take a look at the signs and symptoms (and I will tell you what they actually mean, having experienced them before) so that someday you can help save a young life.

Symptoms of Type 1 Diabetes

(These are the common symptoms you will see everywhere you look)

Frequent Urination

Unusual Thirst

Extreme Hunger

Unusual Weight Loss

Extreme Fatigue and Irritability

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From our experience you can also have these symptoms
Vomiting
Blurry Vision
Extreme Weakness
Lack of appetite

Unusual Thirst
When it says unusual thirst, I'm talking every 5 minutes, always attached to a water bottle thirst. When your blood sugar is high, you become really thirsty. If you notice your little one, or perhaps hear of a friends child being thirsty all time time, it doesn't hurt to get them tested, or let the parent know it could be a sign. Diabetes takes hold, and doesn't let go. It acts quickly, and it's very serious. When Clifford was diagnosed he was unconscious for the first day because he was in DKA (Diabetic Ketoacidosis). 

Diabetic Ketoacidosis is a serious condition that can lead to a diabetic coma or even death. Your cells are not receiving the glucose they need for energy, and will begin to burn fat for energy, which then will lead to ketones. Ketones are acids that build up in bloodstream, and appear in your urine when you are not getting enough insulin. They are a good warning sign that you have type 1 diabetes, your diabetes is out of control, or you are getting sick. High levels of ketones can end up poisoning the body, and when they get to high lead to the development of DKA.

As you can tell it's nothing to prolong, or perhaps I'll ask the doctor about it next time, well the honest hard truth is there may not be a next time to ask about it. Do it now if you suspect anything unusual.

Closest Picture to "Before Diabetes", this was in the hospital at Diagnosis, notice how 'tiny' he was.

As you can tell from the picture, Clifford looked really tiny (at least it's able to be seen by me now), he lost a good deal of weight before being diagnosed with diabetes.

After Diabetes, Healthy and on the life saving medicine known as Insulin.

We are almost 3 years (2/28/10) into our Diabetes journey and what I can tell you is the media is confused, Hollywood is confused, and many actors and actresses are confused. They mix up type 1 and type 2 diabetes all the time, and it's not acceptable. Because knowing the correct symptoms can literally save someones life!

A Full Time Pancreas

Sometimes after a long day or night of Diabetes I think... No wonder his pancreas decided to quit, this is a TOUGH job! No matter the amount of work we put into it, the consistency with meals, carbs, etc, nothing is ever going to be the same. I heard once that with Diabetes there are three things that are in your control (Counting carbs, amount of insulin you give, testing blood sugar), and there are 800 different things that you cannot control. I don't know about you but 3 to 800, I don't like those odds.

What does it mean to be a full time pancreas? I'm honestly not 100% sure. We are almost 3 years into playing Clifford's new pancreas and I haven't got it all figured out. I know that when I go upstairs at night to test him, my heart isn't sure how to feel, if it's a high # I'm up making sure he doesn't drop too fast, if it's a low # I'm up making sure he goes up quick enough. If it's a normal number, I go back to sleep for a few hours with the uncertainty of what's going to happen in those few hours.

I know what it feels like to put your child to bed at night with no worries, and that their body is going to work properly and do what it needs to do to keep them alive. We have kids that don't have Diabetes, and let me tell you that feeling is refreshing and wonderful. So if your reading this and your kids don't have diabetes, no matter what is going on in your life at this very moment that you think is horrible, just soak in that feeling, as there is none like it.

It takes some time swallowing the feeling of putting them to bed at night, saying I love you's and "I'll see you in the morning" when you really don't know if that second part is true. All you can do is do the best that you were trained to do and hope that you see their smiling faces in the morning.... That's what being a full time pancreas is.

Diabetes is...

Diabetes is facing your own mortality on a daily basis, looking it in the eye, and saying not today! How can you stomach hearing a 9 year old, who just brought home straight A's for another semester say "As long as I live to find the cure". Not until a cure is found, as long as he lives to find a cure for everyone else.

If diabetes has succeeded to accomplish anything in my son's life, it is this. We now have a determined, SMART young man, out there wanting to be the one who finds a cure. We will have a doctor who will stop at nothing but to have no more fighting diabetes for his patients. How can you hate a disease that has created this individual.

Before diabetes he was still destined to save others, he was still going to make a difference. That was because he wanted to serve his country. But since Diabetes has taken that option away from him, he is now destined to serve others just like him, and make their lives better.

Have you stopped and thought about your own mortality and what it would be like for those around you? Chances are you may have from time to time, chances are you have even come to terms with dying. But try being a child who has come to terms with dying. A child who hasn't even really lived yet. I can as an adult living 30 healthy years so far, come to terms with my own mortality. But I cannot fathom or even consider coming to terms with my son's mortality. Some people may think I'm strong, and from time to time I consider myself to have gone through hell, and bounced back looking forward to what's ahead, and for that I am strong. But I have no where the amount of strength that my 9 year old boy has. He lays his head on a pillow every night, knowing full well he may not wake up in the morning. That is hard for me to swallow, but imagine being a child and having to swallow that.

I write this not for those that have diabetes, because they have lived this, some of them as children, and are still living it. I write this for others who do NOT understand just what diabetes is, and what it does. Take a moment to think about everything. Try living your life from this moment forward like someone with diabetes does. Go to bed thinking you may not wake up in the morning, so it is your duty to live your life to the fullest, not to let any opportunity pass, and fill your day with nothing short of pure awesomeness, and make a difference in the lives of others.

No Winning - With the Numbers

It goes without saying that Diabetes is one of those things that has to be in control at all times. Otherwise, well it would be a piece of cake, right? You can battle it daily, think you have it figured out, think that the same meal that gave you that nice 100 the day before will do the same again, same bg (same carbs),etc, etc. But instead you end up with a 205 ?

There's really no explaining it other than, that's diabetes for you. Before diabetes life was care free, do what you want when you want, no stop to think about carbs, no weighing food, no thinking, "Is he just acting up, or is he low, or high?", none of that. But with diabetes you have a new found responsibility. Whether you are a PWD, or a D Parent, you now have the responsibility of helping to do the job of an internal organ that decided they were done, outta there, tired of working (Whatever you like to refer to it as).

So in being that organ (the pancreas by the way, for those unfamiliar) you have to figure out all the "what ifs". So if the bg number is 100 and you're giving 50 grams of carbs, you know to give a certain amount of insulin based on various math, however can you take into account the exercise you may experience chasing after your dog an hour from now, or the fact that you are getting the flu, but you just don't know it yet, or how about puberty?

Nothing much to learn from this posting other than the numbers are never consistent no matter what we try. And that's diabetes.

Why Is Nighttime So Scary

This was one of my most viewed blog posts at over 5K views, so I felt like it's something that should be shared once again.

You may hear many parents of Type 1 kids talk about how they don't sleep much and how scary night time is. But why is night time so scary? Let's look at it this way as a person without diabetes, your pancreas is still fully working properly, you can go to bed and not have to worry about anything going wrong with your blood sugar, that's because your pancreas is working around the clock to ensure you are stable all though the night with insulin and glucagon (if you happen to get low). However with Type 1 diabetes Clifford's pancreas gave up and quit it's job. Now it's our job to function as his pancreas. Unlike a pancreas who really doesn't require sleep, we as human beings do. There are a few things I've learned about night time. 1. I dislike it, but also love my sleep. 2. It's so unpredictable with diabetes. 

I've had an endo tell me once to stop testing overnight so much, that really all he needed was tested 2 nights a week. Well that didn't sit too well with me, but overworked, and sleep deprived I decided to give it a shot one time, and go to bed without testing him. Yes that might shock pretty much all of you, but we were new to this and I decided to listen to the medical professional. Well what happened you might ask? Clifford woke up at 3am and was "dizzy", after testing him he was low with a blood sugar of 50! I knew that feeling in the pit of my stomach was something to listen to when I went to bed.

So as we move on in this game I learned something else just last night. Last week before Clifford's dental surgery I talked with his diabetes educator, she wanted to get his numbers and see where to change his Lantus to before the surgery and the fasting he had to do. Well that night he was below target at 111 at 11pm, his target for bedtime is 120. So I decided to treat and give him 15g's to help get him above target. He happened to wake up a little higher at 240. The educator said with him being so close to target that he didn't need treated to help get him up. Okay well last night rolls around, I again tested him before I went to bed at 11, and he was 112, I decided NOT to treat, and went to bed, 2:30 he was tested again and he was 130, not bad. However 6:30 came around and Clifford woke up feeling "dizzy". After we tested him he was 68.

The lesson I've learned from these two experiences is one I've always knew 1. Diabetes is unstable. He could have been 112 another night and not got boosted up by juice, and still woken up high, or he could have dive bombed as he did last night. What I've learned is if I do not feel comfortable with the number prior to going to bed as I didn't last night (but listened to the educator) I will go with what I feel is best. I mean I understand that his diabetes team is very smart and educated in their field. They are however not experts at Clifford's body. Unfortunately I am no expert at his body either, but I have more of an inside look than they do in caring for him 24/7.

I think I may have sidetracked from the topic of this post, but you can probably guess as to why night time is so scary. Non -working pancreas can lead to many problems during the night, including fatal ones that cannot be undone. So every morning we Thank God that Clifford woke up alive and awake, and for that we are truly blessed.