I'm not crazy...you're crazy!!!

The most frustrating part of this unrelenting illness is that you can't "see" it.  To the naked eye yes I might look fine...what you don't know is that I'm seeing stars, my heart is pounding at 168 bpm, I have a migraine, I'm sinking my heels into the ground so that I don't fall over, I feel like I'm going to loose my lunch and if I could find the person who is making the room spin I'd give them a piece of my mind!  If one more doctor looks at me and tells me it is all in my head I am going to SCREAM!!!  (Brace yourself for a venting session)

The neurologist that originally diagnosed me with POTS, which was confirmed with a tilt table test, has now boarded the crazy train and is headed straight to Insaneville.  I am so tired of having to defend myself.  I am constantly having to be my own advocate.  It is exhausting, frustrating and depressing.  I just don't understand it.  Why, why, why?  Did God allow me to be inflicted with this terrible illness?  That is not for me to know, I wish it was, but it is not.  My only prayer is that I can find a doctor that knows what they are talking about and will LISTEN to me.

When this all began, the neurologist I am speaking of diagnosed me.  It was a cardiologist that I was seeing when I was pregnant that confirmed it.  The cardiologist preformed the tilt table test and had no previous understanding of POTS but agreed I had Dysautonomia.  After I had my baby my symptoms went into remission the entire time I was nursing and then they came back. 

When my symptoms came back I began seeing a new cardiologist who "specialized" in POTS.  Who preformed an array of autonomic tests that all came back abnormal.  This cardiologist went as far as to diagnose me with neuropathic POTS.  He began treating me and nothing worked I got worse and worse until I got to the point where I couldn't walk.  I was too weak and was fainting too much.  I became wheelchair bound anytime I was outside my home.  When the doctor had no where else to turn and could not explain my symptoms I went to Mayo.

After all of this, I get to Mayo and they throw out my diagnosis and tell me I have functional dysautonomia (I'm making it up)  that I am simply deconditioned.  When I went for my stress test my heart rate spiked followed by a plummet in blood pressure and a near passing out incident. 

Now that I'm back and in the Texas weather, of course my symptoms are worsening yet again.  My bladder is beginning to malfunction to the point of self cauterization amongst other things.  After I returned, the cardiologist I was seeing that was the "specialist" jumped on board with the Mayo doctor and said he agreed.  I don't have POTS and there is nothing else he could do for me.  Since then I have had no one else to treat me.  My Primary has been my saving grace prescribing me the fluids that are helping and trying to help me get my issues addressed.  But she doesn't understand the illness enough to really help.

I went back to see my neurologist yesterday for the intense and frequent migraines that I have been enduring.  Of course we had to catch up, the first thing he did was pull out his notes from Mayo and then proceeded to give me an hour dissertation on how crazy I am and that I am making this all up.  He told me I should have never gone to Mayo (when he's the one that called and got me in.)  I looked at him and said so you're telling me that a person can make their blood pool in their legs, make themselves not be able to urinate and so on.  He looked me square in the face and said sure.  People people can pretend to be in comas all the time.  I'm not crazy!!!  He's crazy!!! 

How is it that I was diagnosed by three doctors that all gave me the same diagnosis and yet one doctor (who refused to even look at my past medical records) makes everyone jump ship???  Seriously?  I'm no rocket scientist but lets just look at the facts here. 

Where does it end?  Who am I supposed to turn to for help?  No one believes I'm sick.  Meanwhile, I'm the one suffering.  I went to Mayo for treatment not a diagnosis.  Now I have nothing.  In case some of you are wondering, the catalyst for all of this is is that the doctor from Mayo didn't bother to send my test results or notes until two months later...and here we are.  Ugh!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Invisible Enemy

I'm fighting an enemy
that I can not see.
It's weapons and tactics
have overtaken me.
But even in darkness,
I walk by light.
My Lord, My Savior, is by my side.
He lets me know that
although times are tough,
in his perfect way, his grace is enough.
I'm fighting an enemy
that I can not see.
This Dysautonomia will not beat me. -A. Holt

Me and my baby

My new port...

For those of you fellow potsies that find yourself in constant need of fluids...I couldn't be happier with my port.  Although, I was a bit sore after the surgery, the benefits have far out weighed the cons for me.  It has allowed me to get back some of my freedom.  It gets accessed once a week and I can do my fluids at my leisure.  Which allows me time for more important things...as you can see :)