Paris

Paris.  I have a love/hate relationship with the city...  I think it is a beautiful city, but when I visited (admittedly close to 20 years ago) the people were so RUDE.  I have been to other European countries (even some that didn't speak English - as their main language), but no one was nearly as rude as the citizens of France.

That being said, the events of last month in Paris hit me hard.  I felt the attacks the most I had felt terrorism since 9/11 (I grew up in New York...so that REALLY hit close to home).  The stories about the Bataclan Theater bring me to tears.  I grew up in clubs (figuratively, not literally) seeing rock bands.  By my count, I've been to 800 concerts.  At least 200 of those were in clubs.  When I worked in the music industry, I was in clubs sometimes 4 times a week.  I spent time with radio station and record store employees, tour managers, merchandise guys, road crews, bands, etc.  These were my people...  Spending time with a lot of these people, we were all very much alike.  Not the most popular people in school, never really finding a "place in the world"...and suddenly in the world of music it all made sense.  Music is a huge part of who I am.  For me to go to a club to see live music is a night out.  No big deal...  For the 89 people that died at the Bataclan, they probably felt the same way...it was a night out to see the Eagles Of Death Metal.  It probably never crossed their minds that they may not make it home that night...

Here is the definition of Terrorism:

1. the use of violence and threats to intimidate or coerce, especially for political purposes.

2. the state of fear and submission produced by terrorism or terrorization.
3. a terroristic method of governing or of resisting a government.

ISIS was trying to create fear.  They were trying to get people out of their normal routines...to think about being scared.

The family was down in NY for the Thanksgiving holiday (we alternate years).  I was able to get tickets to the Macy's Thanksgiving Day Parade for the family and was looking forward to going.  My initial excitement was tempered with the response from my wife of "Maybe this isn't a good year to go."  I hadn't even thought of NOT going.  We had gotten married less than a month after 9/11.  Due to fears of my wife and her family, we changed our Honeymoon plans.  I had always regretted that... Not just because we lost a boat load of dough, but because we did exactly what the terrorists wanted. We acted scared.  We changed our lives.  I wasn't going to let that happen again...

"This is a once in a lifetime opportunity.  The boys will absolutely love it.  It will be special." I told my wife.  She agreed and was ok with going...even, eventually, looking forward to it.  I told her we should take the LIRR into Penn Station, then walk the block to Macy's.  It will be super easy...

Wednesday night before Thanksgiving, I went to see Andrew McMahon in the Wilderness at The Paramount in Huntington, NY.  My brother works security there and got me on the guest list.  It was a blast.  The music was great.  I bumped into an old friend.  I spent time with my baby bro.

You know what?  I never once thought about the Bataclan or those 89 people, until...my mom started texting me and pleading me to drive to the parade (she had been at home with my wife).  That was followed by a 12:30am text from my wife to drive to the parade.  I caved in...and agreed.  If it would make her feel less anxious about going into a large group of people in a major city, then so be it...

You know what happened...  We had a great time...and got stuck in 2 hrs. worth of traffic coming home...

I believe in being cautious.  I believe in knowing what is happening in your surroundings.  I don't believe in being scared.  Life is too short.

I will continue to live and breathe music.  It's part of my soul.  I won't let anyone...especially terrorists, take that away from me.

Sports

I sit on my couch watching a football game.  It doesn't matter what game it is because "my team" (the Jets) already played this week.  I'm just watching for the sake of watching (also due to Fantasy Sports implications, but that's another story).

It got me to thinking...why do I like sports so much?

It's not a simple answer and it comes from a lot of places...

Part 1 - Dad.  My Dad loves sports.  He was never the most patient Dad in the world while growing up.  He doesn't relate well to young kids (as he is very logical...and kids are not).  He was usually pretty short with me as a kid, but he always had a lot more patience when he was discussing sports.  Watching the Mets or the Jets was always a time for us to bond.  He would explain strategy and get upset when the Manager or Coach didn't do what he thought they should.  It was our time.  All these years later, the easiest (and most frequent) conversations with my Dad revolve around sports...

Part 2 - Friends.  I didn't have much of a place growing up.  I didn't know where I fit.  I was always the square peg in the round hole...except when I was playing sports.  Baseball, Soccer, Basketball...it didn't matter.  I wasn't the best athlete, but I had pretty good genes and I was pretty smart.  These traits were helpful when it came to playing (and not embarrassing myself).  On the field I made friends.  A few of them are friends for life.  I always felt like I had a place while playing sports.

Part 3 - Drama.  The thrill of victory.  The agony of defeat.  All that stuff...  If you are truly invested, then you feel it when your team wins or loses.  My heart was broken recently when the New York Mets lost the World Series (in shocking fashion) to the Kansas City Royals.  I was in attendance.  It was the second time I had been to a World Series (the other was in 2000) and it was the second time I saw another team clinch the Championship on "our" field.  It sucks.  I spent the next few days having "I'm sorry" conversations with my friends...

You know what?  As much as it stings...it doesn't matter in the grand scheme of things.  I still had to wake up the next day.  Still had to go to work.  Still had to make sure The Attack was ok...and his BG was good.

There is nothing more sobering than to walk out of CitiField after the Mets lost the World Series and see a BG of over 300 on my Pebble Watch.

Sports.  You have so much meaning in my life.  You are fun while you last.  Your significance ends when the game ends.

There are more important things to worry about. 

Rollercoaster

Not The Attack's...but could be...

So come a little closer

There is something I can tell yeah

You are such a roller coaster

- Bleachers "Rollercoaster"

Sure the song is about a girl (or a guy - if that's what you like), but it sort of represents life with diabetes.  It's a rollercoaster.  Up and down.  Peaks and valleys.

I have a greeting for the few people in my office that I like and have a sense of humor.  It's a middle finger salute.  My way of saying..."Hey, you're number one in my book!"  With diabetes, some days I just want to stick out my finger in the angriest of ways.  I try not to hate...but I HATE this disease.

This morning The Attack woke up and jumped into bed with me.  We had an early morning cat nap before I needed to get up and get ready.  While in bed, we got a call from Nana (his Grandmother on the other side).  She was asking if he wanted a little DD for breakfast.  He wanted a bagel...I said no.  Not so much because I am from New York and have massive disdain for the rolls that pass for bagels at DD, but because I knew his BG would go through the roof with a bagel...  "Why don't you get a bacon, egg and cheese on an English Muffin?" I asked. "That sounds good.  That's what I'll have."

I immediately grabbed the Kindle and looked up the carb count for the sandwich.  32g.  Seemed a little high, but then again it is Dunkin Donuts.  He also wanted milk (12g) and a squeezy yogurt (10 g).  54 g. for breakfast.  Not great, but not terrible.  I pre-bolused  him for 25 min. (the regular breakfast routine so that the "bell curve" works in reverse for us).  He was at 200 when I bolused him...about 160 or so when I left for work around 7:30am.

I drove to work, listening to Howard Stern as I normally do...when I began noticing alerts on my watch (we have Pebble Watches linked to Dexcom Follow).  Before I knew it, his BG was 150 double arrows down, 125 double arrows down, 100 double arrows down...then 78 double arrows down.

I called Missy to see if she saw this.  Thankfully she was still at home, as The Attack had already left with his Uncle for Theater...  She rushed over to the school (less than .5 miles from the house) and treated.

The PDM was 62 when checking and his CGM bottomed out around 48...with over 5 units of insulin on board.  The Attack didn't start feeling the drop until juice box #2.  60 g of uncovered carbs later and he was out of the woods.

His 8 1/2 year old body sustained the impact of his BG bottoming out.  He was shaky, sweaty, out of sorts...and now had to start his school day.

This all comes on the heels of a 504 meeting at his school with the Principal, his Teacher and the School Nurse.  The Principal was receptive to what we were looking for - except she did reference someone as "severely diabetic" (which aggravates me - you either are or you aren't). The Teacher is fantastic and goes out of her way to be helpful.  The Nurse...just doesn't get it. Comments like "I don't think the CGM helps him.  He needs to be able to feel his highs and lows." piss me off.  He's 8 1/2.  He doesn't know his body well enough yet.  If we have the technology to make his life easier, we should do everything in our power to use it.  He doesn't need to learn a life lesson...he needs to live!

He's now at 302 on the CGM.

Diabetes sucks.  It's a battle every minute of every day and it is exhausting.  It is a rollercoaster and I just want to take The Attack and the rest of the family off of it...but we can't.

This is our 24/7.

Getting Old

I'm getting old.  It's one of those things that doesn't happen overnight (it's a long process), but when you begin to realize it...boy does it suck...

I started to really feel it this year during Baseball season.  I'm a coach for the Boys' Little League team.  For some reason, I ended up with the job of working with the Pitchers, so I spent large amounts of time in a "Crouching Catcher" (not Crouching Tiger or Hidden Dragon) position. Needless to say, the next day (after a practice - or sometimes game) would be rough.  Lower back and knees would be achy and everything would feel dull.

All of my old injuries would come back to haunt me...  The rotator cuff that I should have surgically repaired, but don't want to go through the rehab for.  The arthritic knees that creek when I crouch.  It's all bad news.

Some of this could potentially get better if I did some exercise, except...I HATE exercise.  I feel like a hamster on a wheel working out.  It's boring to me.  I played sports my whole life.  Soccer, basketball, baseball, etc.  I love playing sports and being competitive.  I love being on a team.  The being united for a common goal, friendships, etc.  It's great.  Running on a treadmill...it sucks!

We recently had the last practice for our U10 soccer team.  At the end, all of the kids played a huge scrimmage (with no rules).  In the midst of the game, they asked all of the coaches to come play.  I did...dressed in slacks, a button down shirt and dress shoes.  It was not a good idea.  I ran around, but soon felt like I was in some sort of shape...just not a good shape.  Circle, triangle, maybe even an octagon (but whatever it was, it wasn't good).  I had two opportunities to score...and I did on both. But, the first goal game with a price.  Dress shoes do not have good traction, so when I let loose to shoot, I wiped out and landed right on my ass.  It was not a good look.

As I was sucking wind, I kept looking at my Pebble watch.  The Attack's BG is updated on my watch. It drifted from 180 to 68 in a short period of time...  Next thing I knew, we were both sitting on the bench.  I was sucking wind and he was sucking apple juice from a box.  2 juice boxes, apple crisp and some chicken soup later...his BG stuck around 150 all night.

That night I took Aleve and went to bed.  I woke up with a little less aches and pains.  That night The Attack went to bed with some extra carbs on board to offset the extra insulin on board.  He woke up...and still had T1D.

My aches and pains may recede, but his T1D won't ever...until we find a cure.        

Born To Lose

"Born To Lose" is what my friend Howard had tattooed on his forearm.  It was in Japanese, so it realistically could have said anything...but I believe it really did say that.

I originally thought that it was a pretty defeatist attitude to have tattooed permanently on your body, but 20 years later it feels rather appropriate for my life.

Don't get me wrong...my life is good.  I have a beautiful wife that puts up with me.  I have two terrific kids.  I have a dog named Mookie.  I have a great house...that is in a great town.  I can't complain. But I will.

My oldest child...The Attack (for blogging purposes) is a Type 1 Diabetic (thus the name of the blog).  It SUCKS!  I put it in caps with an exclamation point because I am trying to scream it to you...  No one (other than a T1D or a close family member or friend of one) gets it.  It is 24 hrs. a day.  7 days a week.  There is never a vacation.  There is never a break.

A quick summary of Type 1 Diabetes (if you don't know) is this.  It is believed that a virus triggers it and ultimately this auto-immune disease begins with your body attacking your insulin producing beta cells.  This breaks your pancreas.  Insulin is a hormone that helps move sugar (glucose) into your body's tissues.  Your cells use this as fuel.  No insulin = high blood sugar.  High blood sugar produces dehydration, weight loss, long term body damage and Diabetic ketoacidosis (DKA) - which is life threatening if not treated right way.

Also, TYPE 1 DIABETES is different than TYPE 2 DIABETES (again the caps).  The Attack did not get it because we fed him the wrong foods or because he ate too much sugar or because we are bad parents.  He got T1D because he won the s$%^iest lottery ever!

Please don't tell me that T1D is curable (because it is not).  Don't tell me it will get better (because it won't).  And don't tell me that you know what it's like because your overweight parent that never watched what they ate has it and only has to take a pill (again...TYPE 2 DIABETES).

Needless to say, as caretakers for a T1D child, we (my wife and I) are forced to think and act like a pancreas.  We have finger sticks (to check BG (blood glucose) levels), a CGM (that gets attached to his body to also check BG automatically) and an insulin pump (OmniPod) to deliver insulin.  The average person has a BG of 80-100.  The Attack has a BG of 40-550 (that is the lowest and highest it has gone).  He should be between 80-180...

By the way...if you miscalculate, or if he has too much exercise, or is excited, etc. he could go low.  If he goes too low (40 and below) it could effect brain function.  If he is too low for an extended period of time (such as overnight)...he could slip into a coma and die.  Because of this, my wife wakes up 1-? times a night to make sure his BG is ok and he is still breathing.

How do we do it?  We do it because we don't have a choice.  The alternative is earth shattering.

When you put anything else in life on top of T1D, it starts to feel like someone "up there" is just f@#$ing with you...  Don't know what you want to do when you grow up?  That's ok...we'll make it so you don't really have a choice.  Think that you have bills under control...here's a few more!  You want a tax refund...that's fine, but when you file you'll realize that someone else already filed with your SS#!

Sometimes.  Most times.  I really do feel like Howard's tattoo.  Born to lose.

But then I wake up and realize I'm alive and so is the family (even the 13 year old Mini Schnauzer). 

We have everything we need...and a whole bunch we don't want.

But life is too short.  Maybe today I'll look at it as the glass being half full.

And I'll take losing...