Wednesday, June 22, 2011


Since I stopped my antibiotics, I have gone downhill.  And downhill FAST!  I have had a major return of symptoms and it scares the crap out of me.   Air hunger, painful, stiff neck, feeling like death warmed over!  Headache so bad that I can feel my heart beating in my teeth.  I can physically feel it with my fingertip!  When I wake up my heart is racing (I haven't even sat up or rolled over yet)! I have dropped the 10 lbs that I gained back and am now back at 99lbs.  As I type this, my hands hurt, my muscles ache.  I am feeling better tonight THANK GOD, but have felt so bad I haven't been able to shower since Sunday (it's Wednesday now).   I have been in bed (or couch) since Sunday afternoon.  I had a decent morning Sunday and Saturday night was good, but I had been in bed (or couch) for several days before that.

I am sure the immense amount of stress me & my family have been under has had a lot to do with the relapse as stress weakens your immune system....

I am scrambling to get on the Alinia (anti-malarial drug) my doctor prescribed as a cyst buster.  I have a $500 deductible and a $60 co-pay.  So I need to come up with $560 for 30 pills.  But after that it will be $60 per month.  Please pray that this works for me!  My doctor will have me do it 2 weeks on (500mg twice daily) and 2 weeks off while doing IV rocephin.  I am hoping that even though my doctor is on vacation until mid-July, that his nurse practitioner will order up the bags of IV sodium chloride I need.  I have 25+ vials of rocephin and at 6 doses a week (2 grams twice daily) that will last me a month.

I got to see my dad on Father's Day.  I haven't seen him since weeks before his chemo & radiation treatment started.  He doesn't look so hot but he is hanging in there.  It was nice to see him and my mom.
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