Sunday, March 24, 2013


I'm gonna be honest up front so you can turn away if you want, this won't be an entry of sunshine and rainbows.  I'll try to muster up some positivity but, I can't make any promises.  Alas, I told myself I would post here everyday.  

My doctor suggested a lower dosage of my prednisone because it wasn't making a dent in how I was feeling.  He didn't want to keep me at such a high dose if it wasn't working.  A lower dose for longer would be more beneficial with a little less side effects.  I was eager to be less hungry!! I mean, seriously, I feel like I am STARVING all the time and can't get enough food.  If I was a petite tiny thing, it would be cute and endearing.  Instead I sort of feel like a hippo trying to hog all the food in the river.  Anyway ... I lowered my dosage as I was instructed yesterday morning.  I felt pretty horrible yesterday but didn't think it would have come back that quickly. 

Today is worse.  I am winded and tight chested when talking, I can't walk far without feeling like I'm going to collapse.  I get dizzy when I'm just sitting here.  It's like ... I'm watching TV and then wheeeeeeee the room is whizzing around me like a spinning top.  I'm coughing, my lungs just plain hurt all the time.  And that's just below the neck.  My face?  Holy crap.  My face hurts SO bad.  It's like my sinuses are full of pressure.  My eyes want to pop out of my head, my forehead feels like something is pressing it from the inside, my ears are full of pressure and one of them decided to stop hearing earlier for a good twenty minutes.  Then, when the hearing returned on the left, the loud ringing started on the right.  My front teeth feel like I was punched.  

My throat is scratchy and feels thick from the radiation.  There's also my rototilled gums on the left side from radiation.  

To sum up those last two paragraphs, I feel like a steaming pile of garbage, dog feces, and cow poop all raked into a neat lump of person.  

The upside?  Vee came and got me, bought sweet smelling things for me at the mall and took me to her house for dinner.  I got to have meatloaf and mashed potatoes.  It's one of my favorite meals!  The best part?  It's soft food and doesn't require much effort on my part for mashing it up in my mouth. It was delicious!!! Cody and Jordan got home in time for dinner so it was Nana, Mom, Cody, Jordan and me.  Kyle and Melanie even stopped by.  I was surrounded by love.  It made everything my body was doing feel better for the time being.  I pushed myself to be involved, to talk, to laugh, to spend time with them in that moment.  

I faded fast, however, and now I am home.  Loki and the cats have been fed and I am letting him play a little before I sneak off to bed.  Right now it feels like there is a ton of bricks sitting on my chest.  I absolutely, positively, without a doubt, DO NOT want this Wegener's to get any worse.  The lasting damage scares the crap out of me.  I don't want my nose to collapse, my kidneys to fail, to have permanently damaged lung tissue, lose my hearing or eyesight. Shall I go on?  All are potential long term effects of advanced Wegener's Granulomatosis.  And every day that I feel a little worse makes me a little more scared for something like that.  My plan is to be ahead of it, to keep it locked up inside me like a sleeping dragon.  Good clean eating, exercise, etc.  I have a plan ... it just needs to curl up and go to sleep now, not keep wreaking havoc on my body.  

It was a good evening.  I am so glad I was able to go and be with my family. Dan had an electrical emergency that apparently he's still working on because I haven't heard from him all day.  I would think since it's 9PM I would have received some kind of word as to what's going on but, I assume too much.  Oh well. What am I going to do?  I'm stuck here sick. 

Back to the radiation routine tomorrow.  If I feel worse tomorrow I'm just gonna cry.  I hate this with everything that I am.  I hate that everything has stopped.  I hate that I can't DO anything.  Do you know what it's like to feel like you're standing on a sheet of thin ice?  That there's a ticking time bomb inside you? At any moment, things could go from what it is now to me being in the hospital.  It's not an easy thing to wrestle with mentally.  

Alright, I'm just being too venty.  I am going to go have some water and try to get ready for bed.  I hope everyone had a wonderful weekend.  The weather was fantastic wasn't it?  It's almost April, that's just crazy to me! 

Anyway ... have a good night!! 

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