Sunday, June 9, 2013

It has a name

I'm an old lady.  I'm hunched over, stiff, limping, groaning when I move, frustrated easily and everything hurts.  I feel like I am 110 years old.  I also have a perpetual cold/flu.  My nose is runny, or stopped up, I sneeze and cough like a sealion in San Francisco.  I am achy and run down and dizzy and out of it as if I have a flu without the fun of throwing up.  There's pressure in my head, pressure in my sinuses that cause my face to throb, the tip of my nose gets these electric bolts that shoot up it.  There's pressure behind my eyes, I have a spot in the lower part of my peripheral vision from swelling pressing against my eye.   I can't touch my eyes, they are tender, the area below them where it would be a dark circle (and is) is sooooo tender.   There's also the fun feelingof the top of my skull being smashed with a sledgehammer.  And, when that stops, someone is sitting on my head stabbing my left or right emple repeatedly with an ice pick.

That's a tiny glimpse into how I'm feeling right now.  This is how I exist ... every day.  I know people who would call in sick for just a minor headache. I don't have that luxury so I plod along, trying to obtain some sort of normal existance even though I just wish I could curl up on the couch under a soft fuzzy blanket in a drug-induced haze so I don't hurt.   Especially since the doctors hadn't care to stop me from feeling like this ... if no one cared, why should I?  Except, when you feel as I do it is REALLY hard to ignore.  

Now that my hips have joined the inflammed joint party, I can't walk normal.  I can't get anywhere in any sort of hurry.  Getting in and out of the 4Runner has been fun.  Going up steps to get into the house takes awhile.  I continue to use the elevator at work.  And you know what?  All people see is the fat girl using the elevator because she's lazy.   I can't go workout and I feel all anyone sees is the girl who's too fat and lazy to go workout.  I know this isn't how my friends feel.  I'm not saying that.  It's just this entire world around me is SO focused on fitness and health ... and I have a disease that wants to kill me.  Well, my own body wants to kill me.  It's my mis-firing immune system that is trying to break me down. 

On top of all this, I"m getting really depressed.  No one wants the sick girl around.  I'm trying SO hard NOT to talk about it but ... then I get the intense feelings of being alone in all this.  No one knows what this is like, they shouldn't want to know.  

My doctor finally decided to re-run all my autoimmune tests and tested my kidney function. The test for the antibodies that points directly at Wegener's Granulomatosis or GPA was off the charts!!  My inflammation tests were sky high.  He admits that I have this condition, and he wants to treat it.  However, because the aforementioned kidney function tests were good ... he doesn't want to give me the full treatment because the risks (to him) outweigh the benefits. 

I disagree.  He wants me to take prednisone but a light dose.  Prenisone has a very weak immunosuppresant factor. It may help with the inflammation thats tearing up my body but it won't stop my body from going right back to attacking the thing it just fixed.   

I don't WANT to take Cytoxan (oral chemo). It's not that I want to take it for fun.  I want to take it to save my life.  Sure, I'm not in a life threatening position yet with what I have.  But ... I don't want to get to that point and I'd rather throw some chemicals into my body to stop what's going on and maybe ... just maybe ... feel somewhat of a normal human being again.

I don't want to feel different from everyone else.  I don't want to feel like I'm not existing in the same world as the people around me.  I don't want to feel isolated anymore.  I don't want to watch my husband busting his ass on the house and be physically, completely unable to help him.  I don't want to feel like he deserves better ... I don't want to feel like some healthy, skinny girl is going to come along and lure him away because .... after all ... she's not sick or fat. 

I feel like a loser.  I don't want to feel like a loser anymore.  I want to feel like a normal human being.

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