Journeys

be8425a8-9c4a-484d-ab2c-6e124ab6b2b6This week has been an emotional rollercoaster for me.  I have witnessed miracles, endured flares, grieved some losses and generally been through the wringer.  I don’t even know where to start it’s just so much…

I’ll start with the good news… one of the gals in a Facebook group for PBC patients finally got the call for her transplant.  She was super close to the end, a few years younger than me and for some reason her journey has had my attention since day 1.  I have watched her get the call two other times, just to be sent home with her same liver.  When I saw that she finally got her liver transplant, I literally cried tears of joy.  I cried tears of joy for someone who is practically a stranger to me!  Those of you who know me personally, know that I very rarely, if ever, shed a single tear.  But this one got to me.  It was hope in the most tangible form at a time when I desperately needed to see it.  This girl had all but given up after so many futile trips to the hospital, yet still got her gift.  Her miracle.  Her second chance at life.  Here’s to you, my friend!

23931709-675f-4f3e-bc82-649e2639a90cThere are a few different liver journeys that I am invested in with my various groups.  I am rooting for some of these girls whom I have never met in real life, but I cry for and with them, I cheer them on, I pray for them and sincerely hope for their successful journey as if it were my own… as if it were my own life hanging by a thread, waiting for some miracle to give me my life back.  I am not there yet, but the stark truth is that one day I will be there, and I can only hope that someone will cheer me on, root for me and pray for me as I do for them.  

Living life vicariously through the journeys of others can also be an amazing gift, cursed as it may seem.  There is no opportunity for ignorance.  I now know exactly what this disease looks like and it is ugly.  I don’t get to pretend that it’s not that serious – I have watched some of my friends die from this disease already.  Having seen this horrific reality, I am acutely aware of just how dangerous this disease really is.  The reality that this disease can and will end my life keeps me awake at night.  I stress and worry so much that sometimes I forget to live my own life and honor my own journey. 

621b6234-bef3-4da0-aa15-e770c7e9d6d0No two journeys are the same.  The prognosis for one patient can be polar opposite for the next patient.  In my case, I am responding quite well to the medications.  My liver numbers are all in the normal range, and have been for almost two years now.  For me, the prognosis is looking better than originally estimated – Thank Gods for that!  I might be one of the lucky ones that die with PBC, instead of from PBC.  Until then, I shall carry on trying to spread a little love and light into each and every autoimmune warrior I can.  

Stay strong my fellow autoimmune warriors, friends and family. Love and light now and always!

 

 

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