Everything You Ever Wanted to Know About Silence

Standard

This is one of my favorite bands.  When I first started listening to them, I fell in love with the raw emotion and the bitter wounds these songs painted a picture of.  Years later, I related to this band more than I wanted to.  The lead singer, Daryl Palumbo, suffers from Crohns Disease.  This song was specifically written about the disease and it’s effect on his life.  The lyrics make me stop in the middle of thought every time I hear them.  Give it a listen though it’s not everyone’s cup of tea.  If you’re daring, Google the lyrics.

I’ve never reached full remission, not once, with this disease.  I’ve come very close over the years, but as they say, no fucking cigar.  For the past couple of years, I’ve only dealt with problems from my fistula (connects my bladder and intestine).  Pretty lucky, and I am have been thankful.  The “typical” symptoms have for the most part, stayed away.

Well.  They did stay away.  Past tense.  Yup.  I am back in a full-blown Crohns flare.  I had been crossing my fingers over the past week or so, thinking that maybe it was a stomach bug.  Maybe I really wasn’t getting sick, it was a fluke.  It had to be a fluke.  I even had a moment of hope earlier.  I only got stuck in the bathroom just a couple of times.  I managed to eat *and* keep it down.  Luckily my damned innards decided to at least keep the false hope up until I got home.

To be quiet honest, I am having a hard time dealing with it.  The fistula problems and the fatigue are pretty difficult, but the full blown flare?  It’s been pretty hard to deal with all of the symptoms combined again.  Then of course there’s the fear.  The last time I had a flare, was a couple of years ago.  I had been on Humira for a couple of months, and out of nowhere got sick again.  Then I got sicker.  Then the weight starting falling off.  Humira was no longer working, despite increasing injections.  That’s how I ended up on Remicade to begin with.

What if Remicade isn’t working anymore?

I don’t know.  I’m trying not to worry about it, I’m trying to keep my stress down.

Advertisements

Reply, do it, you know you want to!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s