Instinct

I’ve always had a strong sense of instinct and I have followed my gut all my life. Not to sound conceited, but I’m rarely incorrect when following my gut.  That’s not to say I haven’t done stupid things in my life (like falling in love with Niall when he was never mine to begin with).  My gut was screaming at me back then, about how wrong my behavior was. But clearly, I possess the talent for ignoring my gut instinct sometimes too.

But in regards to the medical mystery I’ve been battling, my gut was right.  Despite the #1 expert in the field slamming the door in my face and canceling my first appointment, declaring he did not see an auto-immune process he could treat, that asshole was wrong.

For once in my life, I really wish I was wrong.  But my instinct said I wasn’t.  I kept pushing for more tests and practically have an honorary medical degree by now.  I set about figuring out my case myself.  And well, my dear friends….I was right.

Upon admission to Cedars Sinai Hospital in Los Angeles, I asked the admitting doctor to run a specific test.  It’s in the admission notes that I requested it.  Did they?  Nope.  And I never knew (until I ordered my medical records), that the rheumatologist overseeing my case failed to run it.

They don’t tell you shit when you are an admitted patient, my dear friends.  They just don’t.  Once you are admitted, you get visited by several doctors in your room.  And they ask questions, poke and prod.  And the entire time you’re kinda wondering, “When is anyone going to involve me in this discussion.”  It’s honestly the strangest experience.  I felt like I was some foreign alien while they looked me over, doing their consult.

On my own, I told them what I suspected I had.  But I think their male egos wanted to somehow prove me wrong.  Because my attacks (and the symptoms of that) equal very rare complications of the disease.  I read their non-verbal behavior to say, “Yeah right, you have this disease.  Statistically, it’s rare to find these symptoms in a patient, especially since your labs look great.”

But as my lovely eye doctor said to me much later in this journey, “It’s rare…until it’s in your chair.”

Am I angry?  Of course.  These doctors put me through hell, referring me to the director of MS believing I had MS.  And I lived for over a month believing that the doctors listened to me, ruled out this auto-immune disease and somehow determined that I really had MS.  But those fucking piece-of-shit doctors, that the #1 expert in the disease relied upon to do a thorough work-up on me, failed.  And miserably.

Technology is a sector I follow and I had learned about a new test, comprised of 9 antigens which can detect this auto-immune disease in patients exhibiting symptoms for less than 5 years.  It’s the newest test out there.  Which is why basic logic says to order this, instead of the other antiquated tests which detect antigens only expressed when you are decades into the disease (or completely full blown).

My results came back last week: everything on the new test was normal but one antigen.  I tested sky high on that antigen.  There is no reason for my body to be producing this antigen unless I didn’t have the disease…and all the while, I was being dismissed by the doctors.

I’m angry.  I have every right to be.

I want to send a certified copy of this  result to every doctor who was brought into my case at Cedars, emblazoned with the these words: ASSHOLE- I was right!  You FAILED.  Please surrender your medical license so other patients aren’t put though the same hell your gross incompetence did to me.

….actually, maybe I will do that.  I love that idea!!!!

But I realize my anger will only exasperate my condition….so I run.  Or walk on my bad days.  I’m managing my condition the best I can but some days, my symptoms flare to the point of being pretty damn difficult.

I’m not interested in being a guinea pig for big pharma.  I want HSCT to cure me of this auto-immune disease.  First, I must get the final diagnosis (yes despite this result that hasn’t been declared yet).  Then, to convince a doctor to harvest my stem cells, give me 4 days of high intensity chemo to destroy my immune system and then reinject me with the new stem cells.  It’s the only cure.

The only way out of this mess.

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19 thoughts on “Instinct

    1. For anonymity reasons, I don’t wish to publish the disease in case any of my friends are googling and come across this story. All of my friends know I have been battling this mystery diagnosis, so I don’t want to leave too many identifying crumbs. I’ll PM you though 👍🏻

      Liked by 1 person

    1. Yeah…not good.

      I went and saw probably one of the top rheumatologist in LA today. Even with that result (she had never even heard of the test I had run), she wouldn’t provide me the diagnosis. She suggested I do a biopsy which I declined as it is known to cause nerve damage. I have enough symbols to battle- I don’t need nerve damage (on my face) for the duration of my life. It took me explaining just how unreliable they can be, throwing out the statistics before she agreed with me. So strange how these medical visits go. If you don’t know more than the doctors, you get walked into making bad medical choices. The other advice? Head to San Francisco to see a special team of doctors to diagnose my case.

      ….that would be a hard place to revisit.

      …the last time I was there, I was with Nial (my AP) during our affair.

      There is no other facility that can diagnosie this disease in all of America. They have a comprehensive team there with high technology to help diagnose this 100%. Not even Mayo could do what they do…

      So…the plot thickens my friend.

      Liked by 1 person

  1. Omg..wow! What the hell?!? I think you have a calling here. Once you get yourself straightened and healed, you should seriously consider being an advocate for patients (medical detective for lack of better words) Seriously, no one should have to go through what you have been through.

    Good for you for sticking with this, standing up to all these doctors! You are the one that is going to solve this and get your cure. You and only you. Sadly that is the reality in this era where big pharmaceuticals have a bit too much influence amongst other things. You’ve got this!

    Liked by 1 person

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