Thursday, November 3, 2016

Post Number 1

Because one more voice for RA can't hurt.

The purpose of this blog is to document my journey with RA from this point on.  Diagnosed 11 years ago with RA, last year I got a devastating diagnosis.  A common  extra-articular manifestation of RA is RA-Lung, also known as Intersticial Lung Disease.  (so common that my first Rheumy must have *assumed* I knew, because she certainly NEVER said a word about the possibilities in the 8 years I saw her before I fired her 3 years ago.  Long story, another day)

There are so many misconceptions about RA, and the tv adverts for our meds don't help.  Believe me, I've been on Humira for 9 years.  It has never made me feel well enough to put a play ground together, or be a professional chef, and I'm sure Phil Mickelson is being paid for his time (he has scoriatic arthritis, not RA.  and I'm not sure the difference there).  I would guess that if you pool 100 people and ask them just basic questions about RA, most of them would say its just "arthritis".  Most people do not know the difference between OA and RA.  OA is what your granny has, its wear and tear.  RA is auto-immune and incurable and progressive.  Big difference!

So much to say, but there's time.  Today as an introduction, I'll keep it brief.  Since making the decision this week to move forward with disability retirement after a lung flare so bad, it fractured two ribs, and after basically being abandoned by my doctors office during his absence while this flare was happening, I knew it was time to begin to blog the rest of this journey.  In a few months, I'm going to have a lot more time on my hands.  30 years is long enough.  And as one person said, "if its going to start cracking your bones, its time to go home".  Yep.  Time to close this door after 30 years of dedicated service, and go on home.  I have a grand daughter I need to be a real grandmother to before the ILD does me in.  There's more to life than working now.  And after running the numbers, it will be tight, but we'll make it.  I want to go home and live, not stay here until I die.

So join won't you?  This blog is going to be brutally honest.  Because one thing I have learned is that only somebody with RA really knows what its like, not even doctors.  That's the sad part.  That even most doctors are just groping around in the dark with this vicious monster of a disease.

My current Rheumy actually said to me back in the spring, during my first real bad lung flare, "you're not nearly as bad off as some of my other intersticials..."  as I sat there, and every breath was a knife in my back.  I began to wonder....just how bad do I have to be before I'm "not as bad off...". 

Stuff like that.  Those are the things I want to talk about.  I'm tired of watching tv commercials that bring this disease down to the level of a flu.  And there is a plethora of video's on youtube that promise you CAN be healed from RA, all you have to do is go vegan/homeopathic/acupuncture/meditation/glutten free/no sugar/vicks vapo rub  just pick one and you too will be healed from this incurable disease.  *cue major eye roll*

I am terminal.  And that's the other reason I'm doing this.  One day, after I'm gone, my doctors are going to get a card with this blog address on it so they can come and read what I went through.  I've read the average life span after ILD diagnosis is about 4 years, and I'm down one.  My GP says "you've got time though"  do I?  how much?  you can't tell me.  You know why?  I do.  I know why because I've actually done the research.  You have to do a biopsy of lung tissue to see just how far and fast it is progressing.  Even HRCT will not show you that.  All I know, is how I feel.  All I know is how my lungs function today, compared to this time last year.  And it is a great diminished difference.  That's all I know.  I'm no doctor.  But I've learned that sometimes, even the doctors don't know.

But this blog is also to help others with this dreadful disease.  If my journey or experiences can help even one person, or encourage someone, then mission accomplished.

Welcome to my RA world.

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