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Friday, March 31, 2017

Why Am I Not Posting Recipes? Because IT Has Started Again!


Why am I not posting recipes?  Well, because... IT has started again.  UPDATE (See IT Struck Again Last Night - What Is IT????)

What is IT?  IT is a mystery.  Fifty-two doctors in eight years have yet to figure it out!

I see another new one today, 3/31/17!  Many believe it's related to my Hashimoto's.  Others say it's all allergy/immunology.  They all agree, it's a mystery.

I am in search of answers, but it is very frustrating. It was suggested that I try hospitals and specialists in New York City; Columbia to be specific.  I have spent months, literally, trying to get an appointment.

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Here's a brief overview of the fiasco:

I make a call, wait on hold and finally an operator answers.  I get transferred.  The department isn't seeing new patients or they don't take my insurance or they have no idea who to send me to for my symptoms (I've seen "everyone" they say).

I ask for allergy/immunology the next time I call.  They transfer me.  I get Pediatrics!  Really?  Do these people not listen?  I call back.  I am transferred again, to F*cking Pediatrics!

I call back many other days.  More time on hold.  Operators answer.  They transfer me to a specific doctor.  The doctor isn't at that number.  Grrrrrrr.  I ask for a number. I call. They NEVER had a doctor by that name.  My nerves are shot.  I give up. I'm literally shaking.

I have asked all fifty two doctors if  they know anyone at Columbia.  None do.  None know any specialists in New York City.

I call The Mayo Clinic.  The closest one to me is in Florida.  They don't take my insurance and they are not accepting new patients.  I ask for a name of a doctor in New York City.  They give me a name and number.

I call.  No doctor by that name.  I'm shaking again and feel like I'm going to puke.

I Google the doctor's name.  I dial three numbers before I get a not so nice receptionist who says, "the doctor doesn't take your insurance and isn't taking new patients."

Let me explain, the majority of big specialists in New York City are not in network with insurance carriers, I know that from my many years in the insurance field. Articles on the horrific insurance mess coming soon!

I call the Center For Disease Control - long story short, they can't help me. They were extremely nice, but useless to me.

I try several other facilities in New York City, well-known, top hospitals. I know, from a family member who dealt with top specialists in a world-renowned hospital, you don't just call these doctors for appointments generally.  Another doctor SENDS you to these doctors, but... everyone told me to try, so, I tried.  All DEAD ENDS.

I've asked the ER doctors to admit me into the hospital and call in every specialist they know.  They refuse.  It's not an "emergency."  I must be seen outpatient.

They've only admitted me when they "FOUND" something... kidney failure, cellulitis, etc.  But then, they only treat that, they refuse to call in other doctors! GRRRRRRRRRRRRRRRRRRRRRRRRRR.

I've asked several doctors to admit me into Stony Brook - they too refuse.

Are you all as frustrated as me yet?

What is IT?

IT is my nightmare.  IT is life debilitating. IT is a monster.

What are my symptoms?

IT all started about eight years ago (see Welcome - Make Yourself At Home - Some History On Me).  It's gotten progressively worse.

I know I definitely have a gluten, nut and soy allergy.  The rest is questionable, but treated as an allergy.  

However, no one can be allergic to EVERYTHING and that's what has started happening again!

The end of February, 2017, IT started again.  I was horrified.  

Almost anything I eat causes my neck, face, nose, throat and tongue to swell.  What the hell?  I go to the ER and they give me the typical IV of Benadryl and steroids.  I get breathing treatments, etc.  

It acts as if it's an allergy, but, we all agree, something else is going on.  But what is IT?  No one knows. 

When this all started, little by little, things were being eliminated from my diet.  I was losing my mind.  I never knew what was going to set IT off next.  It finally got to the point that I couldn't eat anything.  

I was telling every doctor I knew and the ER doctors and they were all basically blowing me off. They just didn't know (see You Should Have Demanded... Part One).  

One of the supplements the holistic doctor gave me.
Then I met a holistic doctor!  I thought.... maybe he will be my savior.  By that point, I literally couldn't put anything in my mouth (see Back To Basics - Organic Baby Food? The Holistic Approach)   I was put on supplements  and we started from scratch, as if I was just starting food like a baby! 

The doctors and holistic doctor all seem to agree that they suspect this has to do with the parotid glands.  I was sent to an ENT (see Me, My Highfalutin Car And The ENT..).

BUT... I developed kidney failure!  Traditional doctors all swear it was due to the supplements which they say don't give quantities of ingredients and are not regulated.  So... I stopped the supplements and stopped seeing the holistic doctor.

Some of the other supplements the holistic doctor gave me.
It appeared the parotid supplement he gave me was helping.  I'm wondering if it's all out of my system completely now and that's why IT started again, yet I'm terrified to take the supplement again thinking it could cause another kidney failure!  

I've continued eating all organic.  

And now.... IT has started.  The very same chicken and beef I've been eating, I can't eat.  Almost EVERYTHING is causing an issue.  Peas, string beens, carrots, EVERYTHING.  

For the past several weeks I'm  living on Tinkyada, organic, gluten-free brown rice pasta, potatoes and sweet potatoes.  That's INSANE.  

When I was sick with the flu and bronchitis, I couldn't eat anything (my delicious soup) to make me feel better.  All the medications have ingredients in them I can't have.  Basically, I was drinking water and "waiting to die" it felt like. 

I see another new doctor in two hours.  Stay tuned!  

If you or anyone you know has suffered with similar issues, if you are a doctor, know a doctor or hospital, if you can help in any way, please contact me!!!!!  

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For my recipes:

A Stew?  Maybe?

Organic, Gluten Free Crockpot Lasagna in about Three Hours

The Intricate Process of Making A Cup of Coffee

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