Connecting for a Cause....

So here it goes... For my first "real" blog topic I have chosen "Connecting for a Cause".  You may be wondering "why" I have chosen this picture for my first blog topic - You see, there is a common theme between this picture which I will title "The Fog" and what I will be blogging about today....

It's about seeing the hope through the fog of tragedy and/or uncertainty.  

John Bunyan (author of the Pilgrim’s Progress) wrote: “Hope has a thick skin, that will endure many a blow; it will put on patience as a vestment, it will wade through a sea of blood, it will endure all things, if it be of the right kind, for the joy that is set before it.”

In the past year, our family has seen quite a bit; several deaths of family/friends (all way too young), a rare disease diagnosis for our older son, and watching a wonderful father in law battling a rare form of cancer.  If that wasn't enough already, we had Hurricane Sandy... enough said there.

In our family's quest for information/understanding, I found several great websites with information (listed below) which helped with our initial journey.

Learn more about Intrahepatic Cholangiocarcinoma
Cholangiocarcinoma Foundation Facebook Group

Learn more about IGA Nephropathy
IGA Nephropathy Facebook Group

Much Loved - An Online Tribute Memorial with Information on Grieving


Lucky for me, I have a background in clinical research and knew where to begin the journey.  However, others are not so lucky.  

What did I learn from the experience; Once diagnosed, most experience what I will call a "fog".  The feeling of where to begin, what to do, just trying to understand, with an overwhelming amount of  information coming at them and just trying to make sense of it all. 

Next its, its the endless Google searches, whether it's how to obtain information regarding a local support group, finding information on your particular disease, the "where do I go from here" and "what will happen to me/my family"?  Then of course it's the "what about my children/husband/loved one", it's all an emotional roller coaster.  The range of emotions that one experiences runs the gamet.  One can feel numb, blank, wanting to scream, cry, hit something.....  The "why me", "why my loved one"... the endless WHY WHY WHY?

My next series of blog posts will be just that, helping others navigate the world of information and provide a list of resources that they can use on their own personal journey. Whether it's a new diagnosis  or dealing with other unfortunate/unexpected life changing event that one may encounter through their lifetime.

My goal, to help others who don't know where to start...

To all those who follow, I hope you will find this blog useful and will provide feedback on future blog topics that you feel would help other's based on your journey/experiences.

Together, we can Embrace Ur World !