Friday, September 6, 2013

Heavy Heart

As usual, I got up this morning after my 4am treatment, turned on my phone and started my morning routine.  

But this morning, instead of all the usual happy things hitting my facebook feed, I saw quite a few sad posts.

Posts that weren't from my friends...they were from friends of one of my Facebook friends.

The CF Community lost another precious life.

I didn't really know him.

I never actually met him.

We never spoke outside of facebook.

But my heart hurts...

for him...

for his family...

for his fiance...

for the CF Community in general.

As I get older, now that I'm a wife and a health and making it a priority is very different than it used to be.

And not that I never thought it wasn't a priority before, it certainly was.

But I see things a bit differently now.

I probably shouldn't.  

I should have seen my health, and the things I do as being important for other reasons before.

But I'll be honest.  

Before, I looked at what I did (or didn't do) to maintain my health as something that was only going to hurt me, no one else.  

It's true that my failing health would primarily hurt me, but secondarily it would hurt my parents, sister, brothers-in-law, sisters-in-law, nieces and nephews, husband, and now Bert Gert.

Recently I've been very intentional about doing everything I'm supposed to do.

Since my freshmen year in college (when I went in the hospital after getting UBER sick), I have been extremely purposeful about doing my treatments daily.  It started at once a day for 30 minutes, then I bumped it up to twice a day...then my timer on my vest broke, so it was 45 minutes twice a day.

If I was sick, or coughed a lot, I'd do it more.  

I did my inhalers and my nebulizer treatments as well.

I was diagnosed with CF related Diabetes my last year in college.

I've never been good at monitoring this.  Partly because it really only seemed to be an issue when I was sick....and partly because, Seriously????  It's just one more thing to have to do.

So I've been very intentional now about taking my enzymes when I eat, and checking my blood sugars and taking insulin now.  

I'm playing softball with a church Co-ed league, and I'm working out twice a week after school on top of that.  I hope to increase this once I get used to that schedule to begin with.

I'm pretty much a HOT WET MESS...but I'm trying to work on that.

In general, I don't feel bad.  

I think I'm pretty "healthy" for a 33 year old living with CF.

But I don't always do the best job at maintaining the best health for me.  

I'm trying hard.

I have to!

Please don't misunderstand no way do I mean to imply that Kyle didn't do what he was supposed to do, or should do to maintain his health.

I know he did.

CF is a part time job to begin with. 

And even when we do EVERYTHING, exactly right, and go above and beyond....

We still get sick...

We still cough for a few hours during and after treatments (at times)...

We still have to go on IV medications...

We still have to go in the hospital at times...

And that SUCKS!!!!!!!

There's nothing worse than feeling like you're on top of things, doing everything you're supposed to, trying your best in that moment, and finding that your Pft's have dropped.

CF tries everyday to break us down.

to suck the life out of us.

It never stops...

So we can't ever stop!

Dear Kyle,

  I didn't know you personally...but we had a special connection that only people with CF have.  We know personally the ups and downs of living with CF.  Fighting every day.  Fighting on the good days and fighting on the bad.  Doing whatever we can to breathe a little easier, to put on a little weight, to live as normal a life as we can, in spite of all the abnormal things we deal with that others don't.  I'm sad for you, that your new lungs didn't work out like you, I, and everyone in this special community hoped they would.  I'm sad for your family, that they've lost someone so very precious to them.  I'm sad for the CF Community, and that we have lost another wonderful member of our family.  
  At the same time, I'm so happy that you are now breathing easy.  I'm so happy that a nasal cannula, nebulizer, percussion, FEV1, and a million other CF related things are no longer a part of you.  I'm so happy that you now have the ability to do everything your gunk filled CF lungs tried to hold you back from.

Breathe easy my friend.  Run, jump, dance, paint, enjoy the pure oxygen and deep, full breath of life that you now get to experience.  Oh...and put in a good word with God, ask him to bring a cure fast.


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