My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders

This is a critical review. It describes my reader opinions, including the good and the bad.This book, "My crazy life: A humorous guide to understanding mast cell disorders" is (conservatively) about 2/3 about the authors life (by length), and 1/3 about understanding mast cell disorders by length. I found the mast cell disorder content to be medically informative, and useful enough on its own to make reading the book worthwhile. However, I personally found some of the parts about the author's life to be somewhat difficult for me to get through, because it seemed that large portions of those parts were only loosely related to mast cell disorders.I personally purchased this book searching for medical information. While parts of the book contain good and important medical information, other parts feel more like a personal memoir. The memoir parts may have extra value in helping readers to feel like they are not alone in their illness. Overall I felt compassion for the author's illness and gratitude for her work in writing this book. I'm glad it was written.This book is published through LuLu.com (see back cover). This is a self-publishing company, which means that there was no externally imposed professional editing process and quality control after the initial writing was completed. I personally think that the book could be much improved by allowing an external editor to clean it up, make it more concise, and to concentrate and enhance the most useful content. Who knows, perhaps there could be a "Second Edition" one day?Here are my specific (subjective) opinions and readers experience:Chapters 1 and 2: These contain targeted information which gives a good general introduction to mast cell disorders.Chapter 30: This chapter was written by her husband. It is well-written, and gives a very nice emotional understanding what it is like to be a spouse supporting and loving a person with a mast cell disorder.Chapter 31: This contains a list (about eight pages worth) of words that every mast cell patient should be familiar with. There are no definitions provided, but a person could look up the definitions themselves if they wanted. Learning about mast cell disorders really is like learning a new language, and a list of needed words could be useful.Chapters 3 to 29: Generally speaking, the remainder of the book chapters are lighter on generally applicable mast cell disorder information, and are heavier with information about the author's personal life experiences over the timeframe since she first had this condition. Don't get me wrong, there is still some useful medical information sprinkled throughout parts, but this content contains large amounts of subjective personal experiences.These parts were more difficult (for me) to read:1) She dedicated a chapter to talking about a friend of hers whom she had a falling out with, because her friend did not believe she had a real medical condition. From the depiction, the breakup was contentious and hurtful for all. One chapter feels like it is a letter written to this person, explaining why the person was wrong to do what she did. One sentence reads, "I really don't think that you are capable of feeling empathy for people." By its nature, the chapter was written from only one persons perspective, the authors point of view. (From the writing, her estranged friend did not appear to be given a chance to comment.) I personally cringed to see a facet of this personal argument being put into a public medium. At least the friend's name was not specified.2) Perhaps half of a chapter was dedicated to explaining how a bottle of chocolate milk exploded in her refrigerator, and the events that resulted. The author and her husband cleaned up the mess, and this led to her discovering that the refrigerator was purchased under false pretenses (it was years older than represented at the store). This led to the refrigerator being exchanged for free at the store. I don't know if these events had much or anything to do with mast cell disorders.3) Many pages were dedicated to listing her various allergic triggers, and the searches for the physical source of the allergens in her home environment. Mold in the walls and the air conditioners, formaldehyde in the floorboards, additives or ingredients in the foods, adapting and remodeling the house. These events are of course related to her experience of her disorder, but I did feel like they dragged on more than what might be needed. For example, one chapter talks about discovering and removing mold in the walls, and then (at length) the project and process of tearing apart the wall and cleaning up the mold. (I would say that discussions of her triggers and searching for their sources was a common major theme throughout the book.) I would caution readers to know that everyone has different triggers, and that such "elusive" triggers will not necessarily match any particular reader's illness. For example, my own triggers are much simpler. I tend to be triggered (almost exclusively) by eating too much simple sugar in one sitting, or intense aerobic exercise.In summary:I did find the book worth reading, especially since there are few published books about mast cell disorders. I thought that the book included some portion of very useful medical information, but also included a high fraction of personal, subjective materials. Parts of this book felt like a memoir, in contrast to a more focused source of medical information. There is nothing wrong with writing some memoir content, I just feel like potential buyers should be given an idea of what the book contains on all fronts. It was hard to choose a star rating. As a person with a mast cell disorder, I try to get information from any source I can. In the end, regardless of any complaints, I'm thankful to the author for being willing to share her experiences and knowledge.

I had a hard time putting this book down! The author has written it plainly and clearly, a style that I LOVE!!! She shares so much about her own personal life with a mast cell disease. My favorite kinds of ways to learn...from someone who has been there and done that. The author willingly gives of herself so others can be helped. This was my second book on mast cell issues that I have read in my own personal journey of reaching diagnosis of chronic health problems. I also loved the chapter her husband wrote...I became emotional and shed a few tears while reading it. I recommend it for those yet undiagnosed and suspecting a mast cell problem, for those newly diagnosed, for those who have had it for many years, for those who are living with or close to someone who has this and finally for physicians who want to learn more about this.Glad I got this book!!!

This is a book for others that have been doing this bizarre journey knowing there has to be more to the story. After suffering numerous RARE reactions to surgeries, dental procedures, medication, the swimming pool, rain, and my once all time favorite foods, I had to learn what needed to be done. (Thankfully an allergy mom suggested Pam's book.) I needed to know how other RARE patients are coping with not breathing after doing everything the doctors recommend. (Its best to follow this personal subjective book with Dr Lawrence Afrin's Never Bet Against Occam. There is real science behind the elusive mast cell activities) Pam holds no detail back and puts everything out in the open about the humiliation, frustration, confusion, isolation, and mystery of being taken down by ones own mast cells. But she finishes strong with options for getting back to life with a new wiser perspective. I'm never going to go into surgery again with the mystery hanging over everyone in the OR or get late night phone calls from apologetic doctors. At last we are able to prepare for those mast avengers.

Catastrophe, family crisis: but what is worse than a health crisis that brings down not only the person who is sick, but pretty much everyone else around them. Humor helps to get us through the worst of times, but only some of us are capable of resurrecting humor in a bad situation - when that situation is, a horrendous health problem belonging to us! She sensitively addresses the loss of friendships as well as the alienation of family members, and loss of the ability to work.My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders’ by Pamela Hodge covers all the bases and would be choice reading for anyone trying to help someone with their deadly illness, or just from the aspect of wanting to be the best of all possible friends to that person. Her husband weighs in with enthusiasm and frankness to all those partners - so that even that aspect of this struggle, is illuminated. Having MCAS and CIU myself (Mast Cell Activation Syndrome and Chronic Idiopathic Urticaria [hives]) for over five years, I can say from experience that this is a horribly debilitating disease.Pam touches on all areas and provides readers with links to sites to locate not only more disease related information, but also information on hypoallergenic soaps or makeup. She does her best to be a wellspring of minute by minute quips to help the person or family member, cope. Since there is no area of your life that does not require major change in an effort to hold this “disease” at bay (or condition - but I would call it a disease), she thoroughly and accurate depicts the necessary work that goes into redoing ones’ life during this process. Don’t overlook this book because it is written by a lay person - you would be missing out on very sound, and also very humorous, advice.#MastCellDisease#Mastocytosis#MastCellActivationSyndrome#ChronicIdiopathicUrticaria#Angioedema#Anaphylaxis#Hives#GastrointestinalDisorders#GERD#Acid Reflux#Asthma#Allergies

I would just like to say a very big thank you to you both for writing this book. I have recently been diagnosed with MCAS in the UK and we do not have many Doctors with knowledge on this or Histamine Intolerance. Furthermore, we do not have the vast amounts of medications places like Germany, Austria and the USA for example. I am one of a handful of people with MCAS in the UK and my sympton s are very severe. Your book has made me realise I am not alone and in fact there is someone who is worse than me due to your severe reaction to mould. Mine is only mild thank the Lord. Your book has inspired me to write my own book to raise awareness in the UK. Thank you again for sharing your journey and my husband found hope, encouragement and someone to relate to with your husband's chapter. God bless you both.

MCAS can be soul destroying because it of its randomness and its ability to alienate. Pam's book gave me hope and not just because I could empathise with all that she has been through. It made me realise MCAS doesn't play by the rules. Beating it is not so much about fighting as it is about accepting there aren't answers and embracing the absurdity. This book made me realise I am not crazy and made me laugh out loud in part. More than that, it made me realise that I am not alone. It is worth its weight in gold.

Very helpful and well written

What a validating book! Mysterious, chronic illnesses are on the rise in our chemical/toxic filled world and I truly believe that we are the first wave of what is to become a common phenomena; our bodies rejecting our polluted environment. Pam is brutally honest in her struggle to make it through everyday. How she maintains a sense of humor is beyond me! It helps that she has a remarkably supportive family but her pain is palpable when she writes of lost friendships; been there, done that too, Pam! It was hard to read this book at first as I related to it too much and it is hard to accept ones reality of chronic illness. But this book shows that a valuable life can still be led and if anything she is a trailblazer for educating the masses on this rare (though under-diagnosed, I am sure!) chronic illness. Thank you, Pam :)