Friday, October 3, 2008

Gilbert Barr

Me & Sarcoidosis A lifetime partnership by: Gilbert Barr Jr. written in 2002

The first of the few books I have every read about sarcoidosis was this one by Gilbert Barr. Depending on how you look at things you might either find this book really negative, depressing and downright horrible because of the things he went through. I think this book helped me cope with this disease better. He wrote this book from a patients perspective which includes insight to his medication doctor's visit, good and bad. He had sarcoidosis in multiple organs and aside from having to suffer from all the symptoms he had to suffer the ignorance and sometimes disrespectful health care workers or doctors he would encounter throughout his life. It's true though I consider myself very luck because for a couple of months I experience what it was like going to doctors that don't know enough about the disease that they don't even know what to do with you so they keep shifting you around from specialist to specialist. Gilbert not only suffers from sarcoidosis but also from diabetes insipidus. One thing Gilbert stresses in his book for sure is how important it is to have a standard test to confirm sarcoidosis or better ways of getting to the diagnosis faster as it takes some people years to find out what is wrong with them. I have a lot of respect for Gilbert because he let it all hang in this book he didn't hold back because he wanted to put himself out there for those of us to realize that we are not alone. One saying he lives by is "no matter how bad you have it, it could be worst!"

I was in his website the other day and was saddened
to read that he is currently undergoing treatment for colon cancer that has spread to his liver. It's sad but fortunately this is not the way it is for most of us. remember, no matter how bad you have it, it could be worst.

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Sarcoidosis United

Sarcoidosis United
Sarcoidosis United