April 4, 2013

Limited Resources #HAWMC

Day 4:
Sharing Resources

I wish I could say that there is somewhere to turn for someone who was recently diagnosed with Budd Chiari Syndrome.  When I was diagnosed all I wanted to do was find a blog or person who was also living with BCS.  Yes there are other sites that are very helpful.  But I wanted to know more than the causes and symptoms.  I was tired of ready studies and statistics.  I wanted to know what day to day life was with this disease.  And that is one of the reasons I started this blog and that I keep sharing it all here too.

In the beginning I was alone.  Thanks to this blog, I have met a few other ladies who like me are living with Budd Chiari Syndrome.  Some were doing better than others, but it was nice to be able to talk to someone who has been though what I was going though.  Who have been living with Budd Chiari for many years.  One of my friends, got her transplant and her BCS came back a second time. Another girl was very very ill when she was diagnosed but after a having a shunt placed she is doing so much better!  And while I have not found another blogger who blogs about live with Budd Chiari, I have found many other people to talk with who are walking this walk with me.

Thanks to Facebook I have come across a Budd Chiari Group.  Its slow at times, but if you have a question, just ask.  The support you will get back will be a little overwhelming at times.  It is the only BCS Specific group I have found.  However there are a whole handful of Liver Disease Resources that will be a great help with the general things.

I really wish I could share a whole list of blogs and websites to help you understand the craziness that is Budd Chiari Syndrome.  There is so much information about Liver Disease as a whole.  If you have questions you need to bring them to your doctor.  There is no such thing as a silly question.  If I told you all the questions I have asked, you would probably think I was crazy.  But if you have a solid doc, he should answer them and explain them in a way you can understand.

I am always open to questions, so if there is anything I can help you with, please feel free to ask me as well.


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