Thursday, October 2, 2014

Yes, Reality, I see you.

For the last few months, I have been living in a fantasy world. 

My fantasy world isn't one of castles, dragons and pretty winged unicorns.  Nope, my fantasy world is a world in which I am perfectly healthy and a normal 34 year old woman.  That's my fantasy world.  It looks just like your regular world.  However, a giant needle has come along and shattered that fantasy world from my view.

I haven't felt good for over a month.  I brush it off as being tired (80 hour weeks?), I say I am fighting a cold or a flu, I feel alright the next morning and I charge ahead, and then by the end of the day I am feeling like hell all over again.  But, it can be explained by something else.  There's always another explanation other than the glaring potential reality. 

I have Wegener's Granulomatosis/Granulomatosis with Polyangiitis.  I'm a weggie.  I have cancer.  This is my truth.  I live with it everyday.  I ignore it, even when it is a gigantic elephant in the room.  I don't want to have it.  I hate it.  It's a dumb, stupid, piece of shit, disease that I don't want to have any part of ... so I ignore it. 

Could feeling sick for the last almost two months be because of my disease?  I don't know.  My doctor has been on maternity leave and will be until October 17th.  I've done my blood work but ... like usual, my CBC and crap are fine, and then my ANCA and CRP is elevated.  Same ol' Same ol'.  Of course, the ANCA and CRP are my disease indicators but ... they aren't where they were months ago.  So, it's fine, right? 


The reality is that I have a very serious disease.  I know this.  I've talked about it myself.  I have explained it to people who don't get it and want to push me to do more ... for their benefit.  I want them to know the severity of my situation so that I am not taken advantage of.  But then, I take advantage of myself.  I don't listen to what I am saying to others because I feel like I am in control of what happens to me. 

I learned today that I am not.  No, nothing happened to me.  I'm still feeling absolutely horrific, exhausted, run down and broken but ... I charge on.  Nothing has changed with me.  But, reality has returned to my world. 

Phil died today. 

Phil was one of the first people to say hello to me in our Wegener's forum online.  Oh, that forum that I have leaned on so much when I had questions and weird aches/pains, etc.  That forum of wonderful people that spans the entire globe ... the only people in the world who actually know what I am feeling.  Phil was "Batman".  He was always offering insight, advice, arguments, etc.  Phil would check in with me on Facebook whenever I'd post a new worry in our forum.  Phil would explain that I needed to take what is wrong with me more seriously than I have been. 

I didn't listen to him either, guys.   Andy... he knows what I am dealing with!

And now ... he's gone.  He's been hospitalized since August.  Collapsed lungs, e coli, infection, etc.  Phil battled it all, with his love at his side, our Alysia.  She crossed the globe to be with him and ... was there with him when he crossed into another world.  Alysia kept us informed every day on Facebook, giving us updates and pictures of him in the hospital.  She had just said that he seemed to be doing better. 

So why isn't he here anymore?!

Phil's death has shaken me out of my fantasies.  Granted, he was much sicker than me in Wegener's terms.  He had a great amount of complications that he was dealing with from his Wegener's but he was in remission.  It doesn't make this any less scary for me. 

I have Wegener's too.  I'm lucky so far that I haven't been in as bad a shape as others.  But, I do have it.  It could do anything it wants to me. 

Will I remember this next week?  I don't know.  I ignore my disease all the time.  I need to remember it and take better care of myself.  I need to realize that I am not feeling well right now ... and that's a problem.  Something has been wrong for awhile and I don't want to face that. 

I'm shocked into a weird ... shaken ... uncomfortable reality.  Phil was a good man ... and now he's gone.  Alysia ... you're in my heart and prayers, milady. 

1 comment:

  1. I didn't know Phil but learned of his death yesterday. I am shaken too. I like to pretend this disease is not a killer, that I am fine and I always will be. So when someone dies, I feel wobbly and unstable. I'm sorry for your loss and I'm sorry this is both of our realities. :(