November 25, 2001

To Wake in Tears - An Inspiration, My Thanks to Catherine Simone

Thanks to Catherine Simone and her first publication "To Wake in Tears" I now lead a normal life. I have been freed as a prisoner of Interstitial Cystitis and it all began with her publication, an inspiration that led me down the path to health and happiness. It was the very start of a long road ahead in which I would venture down with great hope. "To Wake in Tears" was the very start of my salvation.

In January of 1999 I was struck with the devastation of IC. My symptoms consisted of frequency and urgency of urination, mild to severe backaches, stomach aches, constipation, headaches, neck and shoulder pain, nausea, tiredness, flu/virusfeelings, body ache, shooting pains in my fingers and toes, pelvic floor pain which would run into my legs, vaginal dryness and vaginal tingling. When I was really ill it felt like I had poison running through my veins and many of my recurring symptoms were present at the same time. I would lie very still in bed shaking in fear and praying to god for sleep so that I would not have to feel the pain and discomfort.

At the time I was convinced by various Internet medical articles that I had no choice but to live like this for the rest of my life. I had read that IC was incurable, and current medical treatments did little to offer the IC patient much comfort. I decided that I would have to make the best of it and that I would not live my life in misery. I would find away to lessen the impact of IC so that I could lead a better life. I figured that the start to conquering some of the enigma would be through education, and so I began my search for some books on the subject matter. There were few publications about IC on the market at the time and I purchased them all. One of those publications was "To Wake in Tears", by Catherine Simone.

From the moment I picked "To Wake in Tears" up I could not put it down. First I was emotionally touched by Cath's incredible story which brought me to tears. Then as I read her words she touched on many of my own suspicions, beliefs and experiences. I read intently as Cath spoke of Dr. Fugazotto and how he believed bacteria to be the cause of Interstitial Cystitis, and how following his treatment methods had helped her. Since my IC began with a urinary tract infection and I previously found some relief from antibiotics it always felt hard for me to believe that IC did not have a bacterial connection. I had dismissed my suspicions about a bacterial cause or connection because I repeatedly read that bacteria had no involvement in IC. I found out from reading Cath's book that there were others who felt as I did about the bacterial issue and they got better by following their intuitions.

The book also taught me about all the ailments that accompany bladder symptoms in other areas of the body. It put me at great ease because previously I was in a panic and could not understand why the rest of my body was falling to pieces. I could not find any text on the symptoms that I was experiencing in any of those medical articles I had read. I feared that something more then IC was wrong with me because of this. I did not know that it was very common for the IC patient to have all these other strange symptoms (like nausea and painin my feet!). Learning this through Cath's book put those fears to rest.

Since reading Cath's book I have treated with Dr. Fugazotto, following the anticandida plan during and after antibiotics. I have taken measures to boost my immune system and bring my body back to overall health through diet, supplements and exercise. I have also participated in pelvic floor therapy with success. All of these self-treatments brought my symptoms down to minor irritations, making me 99% free of IC for over a year and a half. Recently I learned of Matia Brizman, a brilliant doctor of Chinese Medicine and Acupuncture, who had many testimonials from IC patients about her success in completely alleviating all of their IC symptoms. After only four months of treatment with Dr.Brizman I have continued to heal and I experience more days without any symptoms of IC. Today I continue to treat with her to bring my body back to afull state of health. All of this began with Cath and her book "To Wake in Tears".

Today I am no longer suffering and in fear. I don't panic when I am stuck in a traffic jam, frightened that I will get the unbearable urge to go to the bathroom and have no where to go. I don't lie in bed scared, shaking and squirming with discomfort from illness. I am strong enough to do simple tasks, like shopping, without being tired after ten minutes of walking around the mall. I don't have to explain to anyone why I am taking ten trips to the bathroom after three sips of water. I can eat and drink what I wish without discomfort. I have all of the little things in life back that healthy people take for granted. I am blessed with the privilege of being able to live a normal life and having the things that most people have without the added burden of illness. There was a time when I thought all those little blessings were lost forever. I have all of these precious things and more because of Catherine Simone’s courage to publish "To Wake in Tears". I have many others to thank in my long journey of healing, but I am grateful to Cath for my start, for shining the light on that road.

Sincerely,

Camille M.
Author and Publisher of the IC Success Stories Website
http://www.icsuccessonline.com

It is finally time for me to write my review about the latest book written by a fellow ICer: "To Wake In Tears: Understanding Interstitial Cystitis" by Catherine Simone. I can sum up Cathy’s book in one word: WOW! We really have some talented writers in the IC community. Cathy is a co-leader of the AOL IC support group, and as such is a very good friend of mine. Obviously, I loved her book and strongly recommend it to ICers and those who know us, love us, and treat us. But I thought that the best way to review Cathy’s book was to offer a sampling of other ICers’ opinions about her book. That way, it’s not just me talking.

**Not to get maudlin, overly-gushy or all that stuff, within minutes of flipping through the book I received in the mail this afternoon, I was in tears - tears of joy that someone has been through what I am going through and came back, tears for you and Charlie, tears for me, tears for all ICers, you name it.  I had that good healing cry you discussed.  I am going to ask my husband and mother to read it and I treasure every page. I thank you for your diligence, your commitment, inspiration and spirit.  I think I can do it now - somehow. I am so happy I received the book today. **

**I received my copy of 'To Wake In Tears' today. I went through the book quickly just to get an idea what it's about. I need to read it again. But this book really makes me feel more positive. For the first time in 2 months, I feel like I have some control over this. There are things that I can do to heal. I am not in favor of medications that just suppress symptoms. Reading this book makes me realize that there are alternatives. Also, I am glad that someone shares some of my ideas and theories about IC. I don't believe it's just a bladder thing. Like the author, I believe it's the body that gets into a seriously imbalanced state. Anyway, I don't think every alternative treatment mentioned in the book is for everyone. But the book does present IC in a different way and gives me a new perspective. **

**Thank you for sharing your thoughts in your book and reinforcing the effectiveness of a positive outlook. As ICers, we respond differently to various therapies. Adding an alternative way of attacking this illness adds another weapon to our individual arsenals. In the same way that you believe, I also think that IC is systemic and not merely a bladder disease. Dr. Stanley Jacob (Father of DMSO) told me years ago that 'IC is a systemic illness with the bladder as a target organ.' **

**  Well, I finished Cath's book and sat in tears reading the last 30+ pages. When she made the statement that it's okay to cry, it's like the flood gates opened up.  No one had told me that it was okay to cry through all of this!!!! We need to get Cath on tour with this book and her story. This book was just so incredible to me.  There is nothing else out there like it!  Cath's strength is just so amazing to me and I'm sure many others as well.  Again Cath, THANK YOU, THANK YOU, THANK YOU!! **

** Your book has blessed me so much.  I got it late this afternoon and have already read 18 chapters.  I can't begin to tell you how much it has encouraged me.  First of all, we have been through so many of the same things. I had systemic yeast, two parasites in my intestines, I am nearing the end of NAET treatments and am in the middle of getting PFD treatments (which are really helping, by the way).  Now, after reading your book, I am going to have to think more about the mercury fillings.  My NAET Dr told me that I was allergic to mercury and treated me for it but I have not had any of them replaced.  As they need to be replaced I was going to have them replaced with something else (have done 2) but I am thinking maybe I need to hurry this process along.  I have also used many of the same herbs. Congratulations!!! I am in definite agreement with you that just because "they" haven't found a cure doesn't mean there isn't one.  We have to do it ourselves.  I wish I had known 10 years ago what I know now.  It has definitely been a learning experience and continues to be.  I applaud you and what you have done.  **

** Cath takes a strong stand in her book. She has a powerful message, and she speaks from experience. Of course it is going to provoke strong reactions. Anytime people are called upon to re-evaluate their convictions, they are going to have emotional reactions. So many women have put their lives completely in the hands of the medical establishment, who can blame them for freaking out a little when someone questions something they have so much faith in. Especially since all Cath does is recount her own devastating experiences with doctors; she doesn't just blindly criticize them- in which case, her story would be easier to disregard.  I am glad that Cath has come along and shaken up the IC community a bit.**

**You have done more for me in one afternoon , than in the last 3 years. I finally see a light at the end of the tunnel (maybe). Thank you so much for this book. I read it to my husband and he said ,"is she writing about you or herself". I hope with God's blessing that we will all be able to be helped in some way with this book. Thank you Cathy. **

** I just received your book and stayed up the whole night reading it.  We all have sure been through a lot.**

** Yesterday I got your book in the mail.  I didn't have a chance to read all yet, but I did skim through a lot of it. It made me cry to read some of the things your wrote.  I could identify with them so much!  You truly put into words what so many of us are feeling and going through having this.  Thank you so much! I sure hope you can somehow get on a TV show and promote this book. I have never before seen a book on IC that tells it so well from the patient’s point of view.  This should be required reading for every Uro out there!**

**I just read a copy of a new book about IC. Some lady from the AOL Support group wrote it and it is wonderful. She tells how she got IC, and how she cured hers. I don't know if this would work for everyone, but it sure has some wonderful alternative tips on helping yourself, but the main message of the book is to take charge of your own medical treatment of IC, with a doctors help if you need to. I think it is one of the best IC books I have ever read because it relates to all of us in some way, tells it like it is, but with compassion in a big way. It is just my opinion, but I certainly do recommend that everyone read this book and see if they can help themselves in some way, whether it is the author's way or their own way. Looking inside ones self to determine what you need in order to get well is not a bad idea.**

**This book really hit home with me. I found a lot of what I initially went through on every page. Although now, I have a SUPER uro!!! It really made me feel good inside for the accomplishments I have made myself with my IC. Just keep an open mind when reading the book and use common sense in treating your IC.**

Also, Cathy has agreed to let me include an excerpt from her book so you can see what all the excitement is about.  By the way if you need information on how to order the book, just write to Cathy at ICHopeLtd@aol.com and she’ll get you all the details. But for now, read on and enjoy…

"Unfortunately, IC is anything but a simple disease. No cause has been agreed upon. No treatment works for everyone. There is no known cure. It is very difficult to make blanket statements about IC, because there is little that has been proven scientifically. From diagnosis to treatments, controversy abounds. I don't have all the answers and I certainly don't claim to. However,  I decided to share my experience and opinions regardless, with the hope that you will take from them what feels right to you and leave the rest behind.

As I sit here among my mounds of notebooks full of conversations among hundreds of IC patients and stacks of medical articles about IC, Prostatitis, and hospital-borne infections, I realize that I can put them all aside,  at least for now, and simply write what I know; what I know to be true about this incurable and devastating disease "they" call Interstitial Cystitis. I choose for this book to be full of information that is not already "out there", that has not necessarily been "spoken", except maybe within the circles of IC patients themselves.

There is much mystery surrounding this disease. So little has been proven and not much can be said to be "known". There is risk in coming forward and saying what you know to be true, when not all the information has been proven scientifically or approved by the AMA as such. However, I take this risk freely, and beholden to no one (not the medical community, nor any organization or corporation) as many of my opinions are those held by many (but, of course, not all) IC patients. In fact, there will most likely be many IC patients who disagree with my opinions about what IC is and how to treat it. But that is okay. If, in your disagreement, you come to understand your IC better, then I am pleased.

I write To Wake In Tears from a deep understanding of the suffering IC patients endure, not only from the disease itself, but from the doctors, medical community, and others in their life as well. It is you, the IC patient, who I do not want to disappoint as I write this book. It is you who is important to me. It is you who I speak to now.

I share my story with you first because I know that there are many IC patients who have had similar experiences. It is worth telling if I can prevent at least one person from having to go through even a portion of what I (and so many others) have been through and/or at the very least let you know that you are not alone if you’ve already been through it yourself. It has been very difficult for me to write this part of the book. Mostly because of how upsetting it is to remember the physical pain, the emotional hurt, the anger, the stress, and the fear I’ve felt over the past three years. To remember…all the times…I woke in tears…"

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Copies of this publication may be made freely as long as the subject matter, including authors, text, and disclaimers, remain intact and are quoted in their entirety. Even better, send me your email address and I'll send you your very own copy (no charge).
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Disclaimer:  The author of this newsletter is not a medical professional and the material contained represents her personal opinions. This information is not intended as a substitute for proper medical care by your physician. The reader is encouraged to seek out other sources of information , especially in conjunction with her/his doctor, when deciding on a course of medical treatment.
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