Facing the Reality

imageLast night I had a moment that stopped me dead in my tracks and brought about so many unexpected emotions.  I’m still reeling from it all.  I have Primary Biliary Cholangitis (PBC), which is a rare autoimmune liver disease.  In dealing with this disease, I have joined several support groups on Facebook.  Normally, having these support groups  is an amazing resource, but last night such was not the case.  Last night changed my reality… forever.

As I was perusing Facebook last night, I saw more than one post regarding the reality of my disease.  One of the founders of our group is currently in the hospital fighting for her life.  She is in stage 4, which is the final stage of PBC.  Her skin is yellow, her belly is swollen.  Her ammonia level is so high that she is now unconscious.  I sat in front of my computer for a long while, just staring down the reality of what this disease actually looks in the final stages.  Her father is posting  heart-wrenching updates, and this has all made me face the ugly reality of PBC.  I have lived the last two years of my diagnosis in a form of denial.  Last night ended that for me.

On a completely different group, I was notified that the President of the PBCers Organization, Linie Moore, has passed away.   She fought both PBC and pancreatic cancer, but unfortunately she has lost  her battle.  This lady was someone who fought for her life and the lives of everybody else around her.  She founded the PBCers organization and has certainly left an amazing legacy behind her.  May she rest in peace now and always.  If you would like to donate to her charity, you may do so here.

The reign of my denial has come to a sudden end, and left me with so many unresolved feelings.  I’m lost, scared, tired and sick.  The reality of this disease is that it can progress very quickly in some cases, and that thought absolutely terrifies me.  That was a fact that I was trying to hide from myself, and last night it slapped me in the face.  I ugly cried for hours last night.  It really hit me in the most unexpected way, and I feel like the only way to justly express the profound loss is to share this with the world.

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Both of these women dedicated their lives to helping others with this disease.  PBC is an ugly, progressive, painful disease.  Through their pain, struggles and suffering they found a way to be a light in the world for the service of others.  They each leave their own very different, very profound mark on this world, and I am in awe of them both.  I can only hope to aspire to the level of love and light that these two women have shown the world every day of their painful battle with PBC.

*If you are a person that prays, please keep my unnamed friend in your thoughts and prayers.*

 

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