Anymore, my life is ridiculous.

I am a big fan of the concept of 'owning your story'...  until, you realize your story isn't even believable by yourself, let alone anybody else.

Anymore, I don't want to own my story.

Anymore, I wish I had a different story to tell.

I think tomorrow, I will tell a story from someone else's life or some made up life.  Maybe I will tell the story of what tomorrow was suppose to look like when I thought about tomorrow, back when I was all of 6 years old or something.

Today's story is about another trip to the hospital.  This time at 4:something AM.

 I don't even sleep anymore.  I just lay in bed like normal people do, so I look like I'm sleeping, but really I'm just waiting for someone to have an emergency that needs immediate attention.  It's working out pretty well.  It's much better than being woken from a dead sleep and having adrenaline  shock your heart into an arrhythmia that lasts until the next emergency or the next time I doze off.   I think the only thing I will change is just sleeping with my clothes on.  It's a bit of burden to have to get dressed at 4 in the morning.

I'm not entirely sure why I feel the need to keep silver lining things, I guess it's just a bad habit I picked up somewhere along the way.  But, Spencer reports some slight improvements.  Nothing earth shattering but slight is better than nothing.  I asked him if he felt as good as his crummy self prior to Salmonella and he said no, not that good yet!  How sad, we just want to feel as bad as we use to.

Well, that's life in the fast lane of Dyskeratosis Congenita...Sometimes, it's like I'm watching the scaffolding on a building just crumble and fall like dominoes.  November has been a dominoes kind of month.



Popular Posts