Journal

Well, now I have a NEW symptom to add to my already never ending symptoms.  Food doesn't taste like it use to.  I made lasagna and it taste the same as bread.  My cokes and sprites don't taste right either.  I have always been super super picky but now it seems that I probably could eat almost anything since it doesn't taste good anyway.  Or, maybe I will quit eating since there is no joy in it.  We will see......

My pain continues and is worse when I lie in a prone position.  Can't figure this out.

So frustrating.  So scary.  

I know everyone is tired of listening to me complain.  The doctor doesn't even pick up a pen anymore when he sees me.  Thank God I have good pain meds.

My tongue is still sensitive and I am still taking Diflucan (2 years now???) This really sucks.  

I just got off Cipro so maybe it's a side effect of the antibiotic??  Time will tell. 

Some days are just worse than others.  I have been having so much pain for the past month.  I just wonder if I am getting more tumors, bigger tumors or what.  This really sucks.  I am only suppose to take 3 percocets a day and I need at least 5.  I hate this.  I wonder if the Octreotide helps.  I know it help with the flushing but I mean if it helps with tumor growth.  

I hate having something so rare and not having anyone to talk to about it.  I just don't want any tests because I don't see what good they would do. This is just not good.  

I wish this sweating would go away.  Of course it is summer so it's kind of normal to be sweating now but it makes my hair stink....soaking wet....yuck!  When I take a shot it goes away but.....

The pain seems to have gone away.  I have it mainly when I lay down at night but it's not that bad.  The doc thought it was bone pain and not my spleen.  I don't believe him. I don't think he knows his anatomy...duh......

Nothing else happening.  My tongue is still a little red and I am back on the diflucan.