Heartbreak

Typically the stuff I write in the blog is fairly upbeat.  So much so that sometimes I wonder “who is this person and when did she turn into little miss sunshine?”  Not that I’m a generally sad person, but come on…anyone who knows me also knows that I don’t wander around my house singing “Always Look On the Bright Side of Life” (come on, you know the song and you’re singing it right now).   I don’t want to focus on the negative of Type 1 here…I don’t focus on the negatives of Type 1 in my daily life.  But the reality can be beyond negative.

I posted 2 stories on the blog Facebook page this week about kids dying from T1.  One of them was a little girl who went undiagnosed earlier this year and died because her blood sugar was so high her body shut down.  It’s a condition known as DKA (diabetic ketoacidosis) and it’s a state many T1s are in when they’re rushed to the hospital and diagnosed.  In many cases it can be treated if caught quickly enough with fluids and a whole lot of IV insulin.  It can also happen after diagnosis, and lands plenty of T1s in the hospital if they’re rationing insulin due to the costs, or struggling with high BG due to something like the flu, or because T1 is being profoundly difficult.  Diagnosed or not, it can be fatal.  For this little girl named Arya, her crisis couldn’t be survived because too much damage had been done for her to survive.  The second story was about a little girl named Sophia who’d had T1D for years, but had a sudden low blood sugar in her sleep that caused a traumatic brain injury from which she was unable to recover.  Technology worked and her parents got the CGM alarm that she was low…but the damage had already been done.  This could happen to any of us, and I’ve seen more stories about this happening to both kids and adults than I ever want or need to see.  It could be me one day.

These stories travel in what seems like an instant across the DOC (Diabetes Online Community).  For parents of Type 1 kids, it’s a constant fear that one of these stories will become theirs.  For those of us living with Type 1, reactions vary.  I see T1 peers who keep the risks top of mind, including those who keep their sugars higher than they would otherwise to reduce the risk of lows overnight.  Some are afraid to go to sleep.  Others of us don’t focus on what could happen.  I can’t walk around thinking that today or tonight could be the day that T1 gets me.  I don’t live in a happy fantasy world where nothing bad can happen – I call myself the “neurotic friend” for good reasons.  I also can’t go to sleep thinking “I may not wake up tomorrow.”  I know the reality.  I know that could happen, that the odds are against it, and that I’m likely going to work in the morning.  But I know that not everyone wakes up.

Diabetes is a punch line.  If John has 20 donuts…blah, blah, blah.  This disease is not funny.  People are dying because pediatricians, general practitioners and ER doctors aren’t taking 5 seconds to wonder about a blood glucose level.  People are dying because patients and parents don't know they should ask for a glucose test - I don't think that's our job, but if people like me scream at the top of our lungs maybe at least we give someone else a fighting chance.  People are dying because they can't afford the insulin and all the things that come with it that they need to stay alive.  People are dying because sometimes things go horribly, terrifyingly wrong and a blood sugar level can drop off a cliff nobody knew was right in front of them.  Kids and adults are having seizures and going into comas and sometimes dying and that was never anyone’s plan, just like Type 1 wasn’t in any of our plans to begin with.  I don’t like to bring doom and gloom into the blog because that’s not me, and because…my parents read my posts religiously, for which I’m grateful.  But I’m not here to scare the crap out of them or anyone else, because I have every intention of outliving my incredible parents and a whole heck of a lot of my peers.  I just want you to know, and I need you to understand that this is serious, it can be scary, and it can be deadly.  Some weeks it’s impossible to ignore that.

I don’t know these little girls and I don’t know their families.  I don’t know the other people that have died from diagnosed or undiagnosed Type 1 recently either, including the 2 young boys I've also read about that passed away this week.  But I know their disease and my heart is a little bit more broken every time I see their stories.  I see them way too frequently.  Jokes are funny.  This isn’t.