November 11, 2011

Lonely no more

The road though life with Liver Disease is a lonely one.  Or it was when I first found out that is what I was dealing with and started writing here.  I couldn't find any other people out there with Budd Chiari Syndrome.  Nothing more than medical reports and a few headlines.  I kept writing to get the thoughts out of my head, to keep my family updated and just in case one day someone might stumble upon my blog and actually find it helpful or interesting.  Most of my comments were from family and friends, and the occasional spam bot.  

Then one day out of the blue a woman writes to me.  All the way from the Netherlands to tell me that she came across my blog and she too has Budd Chiari Syndrome.  I could not believe it.  Someone all the way across the world found my blog.  We talked back and forth about my being pregnant when diagnosed.  She told me there, many didn't believe you could have children if you had BCS.  She offered comfort and friendship.     

Why didn't I think of it before? A Facebook search for Budd Chiari led me to a whole group of folks who also had BCS.  Some were doing better than others, but when I introduced myself, I was overcome with welcomes and hugs!  That is when I found out there were even more places I should have discovered already.  Places like Living with Liver Disease,  The Waiting List and Transplant cafe and eventually here to WEGO.  

It has been a blessing to me to have met the people I have met though these communities.  Its so nice to find support in people who don't even know you but know exactly what you are going though.  Who don't judge you. Who will answer even the silliest of questions.  Who can tell you what to expect with out sugar coating it.  Truth.  And suddenly I wasn't so alone anymore.  

I love hearing from you all.  In comments or emails.  On Facebook or Twitter!  I love talking about my journey, parenting, anything.  I am pretty much home bound so its nice to get a hello every now and then.  So don't be a stranger!

This post was written as part of NHBPM - 30 health posts 30 days:   

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