More Appointments Set

I have two apts set.  One for tomorrow and one for next week.  Both of which require some sort of Prep and Fasting.  Plus, I am still waiting for the Order from my Primary for the test for Addison’s Disease which will require Fasting and getting injected with something at a certain time.  I consider drinking a bunch of crap, getting injected, etc.. Prep.  One gets tired of tests..most of which are invasive with my problems..especially when all so far have come back “negative” but what else can you do?  And, I hate to sound gross but if you think I’m a Hypochondriac…you’re welcome to simply enter the restroom behind me even after I flush  after the 3rd or 4th time during the day I’ve been in there.
 You will see my life is not a joke.  Plus, you will also see I have NO appetite.

 I was telling my husband I really do not like going out to dinner anymore.  I just don’t find it enjoyable at all, and truthfully, it’s a waste of money now.

  I so wish that someone would find something soon so I can start enjoying food and friendship again.

A Journal Direction

So this is becoming a health blog and I guess I’ll start sharing my health or unhealth journey as I experience whatever this is since I have no idea.  For the last 6 months or more..actually the weight loss part has been over a year, I have been losing weight quickly, having terrible abdominal cramping, diarhea & constipation alaternating..more diarrhea lately, no appetite, fatigued, muscles ache a bit,..of course there are my normal headaches and my depression has gotten worse.  I dread the thought of getting together with friends because that means being near a restroom most times and/or going out to eat and I hate the thought of going out to eat, not to mention how to explain my restroom habits.  I am down to 95 lbs.  Remember those stick figures we drew in school?  You could draw my portrait that way.  I have had numerous tests done which are coming out negative and every time I come across something that my symptoms could match I ask to get testesd for it.  I am getting tested for Addison’s Disease soon since I just looked that up and most symptoms seem to fit.
 We think this may have something to do with the metabolic disorder I was born with and my Insurance Company has finally approved me to see a Specialist after a month of arguing due to the fact that he is at a Children’s Hospital and I am an adult but in the meantime, I continue to suffer.
  So, perhaps..I will use this journal to vent my feelings and frustrations regarding this as well as to share with you some of my tests and daily or weekly struggles.  Perhaps others can relate and help me out here.  I pray every day to find a cause as to why I feel the way I do.. not necessarily a cure..but at least a way to get stable and energized again.     

Medical Issues

So, here’s the situation.  I have a rare, metabolic disorder titled Propionic Acidemia and I am the 2nd eldest living with it.  I am supposed to be on a Low-Protein Diet but don’t actually know what that means not knowing exactly how much Protein is needed for people like me.  I have been having major stomach issues lately and have been losing weight extremely quickly.  I have found a specialist in the Metabolics/Genetics Division of Children’s Hospital of Orange County (CHOC) – okay, he is actually the head of that department; Dr. Jose Abdenur who said he will meet with me and they can help me.  They actually study my disease as well as others.  They have a whole department including Nutritionists which I probably need. 
I’ve been waiting on a referral/authorization from my Primary Care to my Insurance.  The insurance is having a problem because the doctor is a Pediatrician and I am an Adult.  The main reason is not because he is not in network.  They can probably get past that.  It is the fact that he is a Pediatrician.  What?  Can they not come up with another title, if necessary?  That is completely ridiculous.

 In the meantime, I feel like The Incredible Shrinking Woman.  Good Movie by the way, but it had a really stupid ending.
 And before any of you tell me to just eat more which seems to be the unhelpful advice some people like to pass on…it isn’t so simple.  I am NOT hungry.  I try to eat.  It’s hard to eat when you aren’t hungry like ever.  Plus, as stated I am having stomach issues so when I do doesn’t really set well often anyway.