Customer Reviews

Me & Sarcoidosis: A Lifetime Partnership: Revised Edition A Patient's Story About Living With A Chronic Health Condition

5 star:		(4)
4 star:		(1)
3 star:		(1)
2 star:		(2)
1 star:		(0)

 

 

I just completed the revised edition (which had the editing issues corrected) as other members of my family are now reading it as well. It was enlightening to finally read a book from an average person that must deal with the same experiences as I do. I was finally diagnosed with sarcoidosis in my lungs and on my skin in 1993. The author does not flinch from outlining his most personal symptoms in a very direct approach. Considering he spent over 4 years being misdiagnosed there were several negative experiences however I did not feel that he felt any self-pity or unjustly bashed the professionals he was exposed to but instead just told the truth and in the end gives credit to those who were able to help him. For me it was a roller coaster of emotions. I appreciate the fact that he gave much due respect to God, his loving family and those who supported him. Although the book is over 300 pages, it touches on every aspect of living with chronic health conditions and the physical and mental stress involved. I admire Mr. Barr's courage to tell his story in such a direct manner and open up to the world. The only thing I found insulting about this book were some of the experiences we all experience and they needed to be told.

As a sarcoidosis patient since 1989 I found it refreshing to finally read a story from a fellow patient such as myself. The story was very emotional for me but yet inspiring as I could relate to many of the experiences written about throughout the book. I would recommend this book to any patient with sarcoidosis, family member or caretaker. We need more stories like this!

I found this book to be an honest account of how an average person deals with living with a chronic health condition. Although we are all unique, I found myself in a lot of the emotions and experiences that Mr. Barr wrote about. I also had the opportunity to hear Mr. Barr speak in late 2002, where during his talk he did actually give an apology for the mistakes in the first version, along with offering to replace the old version with a Revised Edition (IE: in my copy he was given "a pair of crutches" and sent on his way). In fact, I was under the impression that the first version was unavailable as of that time (Fall 2002), but I guess used copies are still floating around. I find it a refreshing change to hear someone stand up and take responsibility for a mistake (even if others were probably responsible) then correct it, especially in such a public forum. My hat is off to you Mr. Barr! It helped me to hear the positive accounts of his support elements, as I do not have anyone that understands, except one family member who lives out of town. But now we have become closer as I appreciate her long distance support more than ever. Although our physical symptoms are different, I also related to the mental aspect of his experiences. It helped me realize even more that I'm not alone in what I feel. The book is a little long (over 300 pages) but all in all it was worth the read. The main thing I enjoyed was just hearing an everyday person's account of living with sarcoidosis. Mr. Barr, please continue to help bring awareness and discussion to our disease!

After reading an interview the Diabetes Insipidus Foundation published in their newsletter with Mr. Barr and seeing him on a Detroit TV newscast, I purchased his book and found it to be very touching, inspiring and informational in regard to understanding what patients with chronic health conditions experience. My sister suffers from sarcoidosis and after reading this book I'm able to better understand the frustrations she endures on a daily basis. Mr. Barr's straight forward, direct approach in telling his story is refreshing in this day and age. He holds nothing back! My sister also found the book something she could easily relate to and currently another friend, who also suffers from this disease, can't put it down. We need more books that tell the patient's point of view. I'm glad Mr. Barr had the courage to tell his story!

Finally a book on Sarcoid from the patient's perspective - Gilbert was able to put into words what I have been trying to explain and have been going through to others since I was diagnosed with pulmonary sarcoid in 2000. I feel all health care providers treating Sarcoid patients should read this book to better understand what we go through - especially since the disease is so rare. Insightful, and thoughtful, I applaud Gilbert's efforts in writing the book. It really helped me as I now have someone to empathize with and have a better understand of my disease and what I have gone through and continue to go through.

Should have named it - I have sarcoid, but listen to ever single health problem through my life. I have sarcoid and while I bought his other book thinking that this one was going to give more insight. Well, I was very disappointed. I found myself struggling to figure out if many of the things he was having happen were actually sarcoid related or just the aging process. Yes the meds and disease does affect other things. But the constant play by play of complaints made me want to throw the book out the window. Anyone knows that going to see a physician is a trying ordeal. BUt over and over you lose your cool and don't suck it up. I take an ipod because I know my day is shot, doing this will help keep you calm. But if you write another, stay specific to sarcoid. A play by play of everything that ills you makes for a very unfulfilled read. I would love to send this book back and get my money back!

This book was somewhat disappointing to me ... the book is not written or edited particularly well, and the author rambles on far too much on disparate subjects. I was also not interested in his childhood or relationship with God. It would be more accurate for him to call it an autobiography, then I could forgive it all. It doesn't cover the type of sarcoidosis I have (neurosarcoid), but that's no fault of the author's. Some of his "Rules" are helpful, but others are just annoying and poor advice (especially the section about alternative medicine).

The focus on disability leave and insurance will be most relevant to American readers.

I bought this book because I was recently diagnosed with sarcoidosis, and was interested in how it had affected him. Well, he had a very unusual case of sarcoidosis, very different from what most people have, so don't read this book for that! But do read the book for the human story of living through difficulty, of striving to go on in spite of desperate circumstances. The author is a hero in my book. The writing itself could have used a little more editing, as there are grammatical mistakes and misspellings. If that sort of thing bugs you, be warned.