Monday, March 25, 2013

What was I supposed to do again?

I keep forgetting things.  I told myself earlier that I was going to call Stanford and UCSF and see what it would cost to have a consultation with a vasculitis specialist down there. My doctor clearly doesn't work with this disease all that much.  He may have a patient or two, but he doesn't seem at all concerned with things that he should be concerned with. I don't know.  I lowered my steroids and the symptoms came roaring back worse than ever.  They were never completely gone to begin with and now they are worse.  I feel like I took a giant step backwards in how I feel.  I know I can't do anything to stop my immune system for three more weeks.  I know this, and I am trying to be patient.  I would feel better waiting if my doctor seemed to be more worried. 

But, like I said, I was going to call them when I got back from my treatment.  But, when I got back, I started writing and didn't call them.  Now it's too late to call them.  Tomorrow I have to call down there.  Something is wrong, and I want to know that I have the best people on my side caring for me.  Kaiser has been great that everything is all tied together.  My original doctor, my primary care physician, could be responsible for saving my life.  She tested me for autoimmune diseases fairly quickly into all this.  Others who have this condition haven't been so lucky.  So, I'll have to thank her once everything is finally taken care of.  If I can remember to do that.  I can't seem to remember to make a phone call when I need to. 

I need to go to Costco and Safeway.  I have no ingredients for my smoothie in the morning!  I want my morning smoothie, damnit.  I didn't get to have one today.  APparently, I put the clear plastic lining from my yogurt into the blender.  Yea, I got a mouthful of plastic while trying to drink it today.  That was quite the ol' shocker.  I couldn't drink it after that.  However, Monica saved me.  She brought me yummy soft treats!! Mmmmmm, donut holes.  I am so happy I got to sit and talk with her too.  I just wish my dog was a little better behaved.  He's too enamored with her.  Seriously, he's in love. 

My ability to do things gets smaller and smaller every day.  I was able to do one load of laundry today.  But, it's something.  It lifts my spirits to be able to do something.  Laundry is easy too, just throw it in.  However, I don't want to go to the store at all.  I don't know if Dan will have time to go get the stuff for me.  It's a small list, easy to manage.  I don't ask for much!  And, hes actually home right now and not busy.  Well, at the moment he's with the neighbor and a beekeeper dealing with a swarm of bees that were found on one of their trees.  Tristan showed me the pictures, it looks like a giant black ball on the tree.  I thought it was a hive but it's all bees!!! Crazy!!  I can't even fathom walking over there so I'll live through their stories and the pictures.  

I emailed my doctor asking to raise the prednisone again.  I've had 4 bloody noses in three days.  My disease is a vasculitis condition, which means it involves inflammation of the blood vessels.  Right now, I have inflammation in my nasal blood vessels, obviously.  My sinus blood vessels are inflamed, hence the pain in my face.  My ears feel like I am standing on the top of a very tall mountain.  I can't get them to pop and the pressure is actually painful.   This all came back as soon as I lowered the dosage per his instructions. I guess it was helping a little after all.  So ... I guess I'll just keep eating everything in sight because I'm gonna have to raise the 'roids back up!!  But, I'll do it if it means I'm feeling better.  I will.

I wrote today.  5676 words today.  I'm up to 152 pages.  I wrote yesterday too but only 2500 words.  I was writing and then just got a little fed up with it.  But, it was something.  Every little bit helps.  It's a work in progress.  I can't force the creative process so ... when the mood is gone, it's gone and I let it go.  It's not my "job", it's supposed to be fun.  I still love writing.  I don't even hate the story yet.  Of course, I haven't done a re-write yet.  I better still love it then.  

I hope you have all had a good Monday.  


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