Doctors Delays

I don’t understand these medical facilities that think they can just make whatever rules/changes they want and their patients are just gong to jump to change along with them.  I have Hypogammagobulynemia.  Hey, I can barely pronounce it, much less spell it.

Anyway, I am supposed to be starting IGG infusions or injections soon.  Last I heard, they were getting approval for the first ones to be done here at  the house or in a local facility near me.  We live in Orange County and this test was authorized and approved by Cedars-Sinai in Hollywood, CA.  but I was told I would go to a clinic or facility somewhere in Orange County.  I just called Cedars to find out what is taking so long and now they are trying to say they cannot get approval and I will have to go to Cedars for these infusions.  I don’t think so.  I explained that would be a hardship because I do not drive freeways and my husband would have to take a day off work every month to drive me.  My doctor at Cedars had already said it could be done here in Orange county.  I gave them the name of my metabolic doctor here in Orange County and asked why I cannot simply go to CHOC (Children’s Hospital of Orange County) to have the infusions done since that is where I go to see my metabolic doctor.  So, Cedars is trying to work that out and I am expecting a call back today.

I am really hoping to get this started soon, as after this is done for a few months; I can get another procedure done which will really help another aspect in my life.

Being chronically ill is a pain..in more ways than one.

Short Health Post

Cedars-Sinai called and I have ‘Hypogammaglobulinemia’.?  It’s a weak immune system and you get 4 hour I.V infusions once a month for like 6 months.  It’s really rare and I guess only like 1 in 4% of people actually get this.  So, now I have two disease type things people can hardly spell or pronounce: Propionic Acidemia and this.

Health & Food

 

My stomach bothered me almost all night last night and woke me up 3-4 times; one time even causing an accident.  Plus, I was coughing, sneezing, freezing again.  If this stuff is not gone I don’t know what to do.
I am starting to wonder if the stomach got so bad because I had Pizza.  I love Pizza but it tends to have a bad effect on me.  Although, so can the Potato Salad I finished and sometimes to much Olive Oil maybe or.. but maybe I should cut out Pizza entirely.  I don’t know.  I should at least finish the other half in the frig first (it’s a Personal Pan) although I should probably wait until Friday after the Hearing.  Who knows with me?.. I am and always will me a mess.  I pray I can convince Disability of this.
I have a Sausage/Potato Dish in the Crock-Pot which completely grossed me out.  It’s not so bad now but I had to touch the Sausage which was totally disgusting.  I’m trying to make different things for my husband