Diabetic drummer

The beginning of the end - we should have guessed Drummer Boy had diabetes by several suspicious things going on during the summer before 7th grade.  Easy to see in retrospect!

There was some excitement at my house yesterday.  A very important piece of equipment stopped working.  That piece of equipment happens to be my son's insulin pump.  It stopped working with only a small buzz of a warning that something was amiss.

Trust me, when you are diabetic, you check all ERR messages on your insulin pump.

And once again I realize that my son has a malfunctioning pancreas.  At some point just 7 years ago, something attacked the insulin producing cells in his pancreas and they went totally kaput. Unlike his insulin pump malfunction, there was no beep or ERR message.  Just a kid who was very sick and a mom who knew something wasn't right.  I suspected diabetes, but didn't want to truly believe that's what it was.  It seemed so unlikely.

Sadly, approximately 80 people PER DAY learn that they are an insulin dependent diabetic.  INSULIN dependent because their body produces not one drop of insulin.  A non-insulin dependent diabetic may produce insulin, their bodies just can't utilize it correctly (and they tend to be older or overweight unlike insulin dependent diabetics).  Some non-insulin dependent diabetics can control their diabetes with diet and exercise.  Not so with the type of diabetes my son has. His prognosis is life with needles, multiple daily finger sticks and counting carbohydrates in every bit of food he eats  and he can NEVER control it with just diet and exercise (though it helps...he just will ALWAYS have to take external insulin).  He's part mathematician, biologist, endocrinologist, personal trainer and high level problem solver.

I was explaining to a family member yesterday how much this disease costs.  We recently had to fill a prescription for a glucagon pen.  A glucagon pen is to a diabetic what an epi-pen is to someone with severe shellfish or bee sting allergies.  It's something you hope you NEVER have to use, but you can't afford to not have one around.  That pen costs $180.  $180 for something you HOPE you can throw away and never use!  Since his pump didn't work, he had to go on insulin shots instead of his "artificial" pancreas.  A bottle of long-acting insulin costs $130.  A bottle of short-acting insulin (which he uses for the carbs he eats at meals or snacks) is about $100.  When he's using a pump, he can go through a bottle of insulin every TEN days.  Do the math...about $300 a month.  His pump supplies are about $200 a month.  Plus there's test strips (about $1 each and he tests up to 6 times a day), alcohol swabs, needles, tegaderm tape, ketostix, glucose tabs, or juice and probably a few other things I'm missing.  This disease can easily cost $750 or more a month at the bare minimum.

Thankfully we have insurance.  I can't imagine what you do if you don't have insurance.  His insulin pump is as much as many used cars.  Seriously.

Maybe that explains why I was so panicked when Craig lost his job in the past.  It wasn't the lack of income as much as lack of insurance for drummer son.

The cost can skyrocket if you don't take care of your disease and end up in the hospital. Diabetics are prone to eye problems, cardiac problems, loss of limbs, kidney disease and more.  Just a few more things to add to the cost of having a disease you had no control over getting.

Maybe that's why I'm passionate about a cure for this disease.  No one wants to see their kid in a hospital bed screaming that they don't want a shot and then having to give them one anyway.  No one wants to see their pre-teen missing out on staying at a friend's house because the friend's parent is afraid of a kid with diabetes.  No one wants to constantly have to monitor food intake, count carbs, wake up in the middle of the night to take a shot because your blood sugar spikes.  No wants to take a major exam when your blood sugar is low, but you have to anyway (and your brain function is highly affected by low blood sugar for up to 48 hours).  No one wants to be discriminated from a job you love because you have diabetes and "might" get sick.

My handsome drummer boy.  

On a positive note, his replacement insulin pump came today.  He's very healthy and is doing great and is very responsible for his own health.  He can talk intelligently to a specialist physician.  And he's one truly amazing drummer and a pretty terrific human being.  There's lots to be thankful for in a pretty difficult situation.