IC Hope: Along the Healing Path Introduction

Along the Healing Path: Recovering from Interstitial Cystitis

by Catherine M. Simone
© 2000
All Rights Reserved

Book Introduction

If you were to read an article about IC in a magazine, you would probably read that IC is a bladder disease characterized by urinary urgency, frequency, and pain that can sometimes decrease after voiding. It might describe the fact that the bladder wall is inflamed and that some people (a small percentage they’d say) develop ulcers in their bladders. This is the typical description of IC. Only, IC is much more than that. You might even go on to read about a new drug that’s out that is helping a lot of people who suffer from this mysterious bladder condition. And after reading this article, quite innocently, you probably wouldn’t think of IC as that big of a deal. But you’d be wrong. Because IC, it is much more than that. If you were to ask a doctor who recognizes IC as a disease (because some still don’t), you might hear from them that IC can be quite devastating for some people and they might even tell you that there are some other chronic symptoms that go along with it. They might even go so far as to say something like, “we don’t know what causes it, we don’t know how to cure it, but we do have ways to treat it that can make it more manageable”. They would most likely tell you that they have a fairly good success rate with the treatments they offer, even though, they’d admit, different treatments work for different people. They might even imply that with a little work between doctor and patient, it’s pretty reasonable to assume that they can find a way to alleviate symptoms for most people. You might think, after talking with this doctor, that IC might be awful, but at least there are treatments available. At least there are ways to live somewhat comfortably with this disease. But it’s not always that easy. You see… because IC, it is much more than that.

I’d have to say, as an IC patient myself, that none of this would come close to helping a person understand what IC really is or how horrendous it can be or how there are SO many people out there still suffering terribly because there aren’t any medical treatments left for them to try. Nor would they understand how many people are still undiagnosed, or misdiagnosed, or don’t have a doctor knowledgeable about IC and/or willing to treat them. I’d have to say, as an IC patient myself, it is very upsetting to read these articles and talk with the doctors who seem to minimize IC, who make it seem like it’s not that a big of a deal. Some articles make it seem like there is a new medication out there that is “curing” people. Now granted, this medication has helped (not cured) some people tremendously, but it’s just not that easy for so many of us. The new drug only helps a very small percentage of IC patients. It is not even touted as a cure. They say it helps 38% of IC patients, which percentage-wise is not much higher than the placebo effect. Yet, when our friends and relatives read these articles in magazines or hear this from doctors, they don’t know that. They don’t get to see the whole picture. And I’m telling you, as an IC patient myself, that this makes life for us even more difficult. The lack of understanding of this disease is of paramount importance. Not just for research dollars (which we all know is extremely important), but also for the emotional and physical well being of IC patients everywhere. My heart breaks when I see the effects of the way the media and medical community have minimized IC. The effect that this lack of awareness is having on the individual IC patient is what I care about. It’s one reason I feel it’s important to speak frankly about how devastating IC can be in a person’s (and in their family’s) life.

IC is not just about going to the bathroom a lot, although frequency is a huge problem that prevents a decent night’s sleep and disturbs or prevents many normal activities during the day. And IC is not just about having to get to the bathroom quickly (i.e., urgency) and trying to avoid an embarrassing accident. IC is about the pain. It’s about having to get to the bathroom quickly or you’ll be in even more pain. It’s about wondering, when you get there, will you be able to go at all. It’s about not knowing when you might have to be rushed to the emergency room to get catheterized. And it’s about praying that whoever is on call at the emergency room when you get there has even heard of IC and doesn’t think you’re nuts or a drug addict. It’s about feeling nauseated because you’re in so much pain that its making you sick, especially when you’re bladder is full. It’s about having a deep, burning pain that pain medications barely touch. It’s about sharp, shooting pains and dull aching pain 24 hours a day for many of us. And it’s about the constant discomfort on top of that pain. IC is about having all kinds of other strange symptoms besides bladder symptoms. It’s about feeling as if your body is falling apart and that there is just one thing wrong after another. It’s about not knowing how you’re going to feel from one minute to the next and no longer being able to make plans like a normal person. It’s about not feeling like yourself anymore and not being able to do the things you used to do. It’s about being left out of things because you’re not well enough to attend. And then it’s about dealing with family and friends who don’t understand how you could be “not well enough to attend”. IC is about having an invisible disease. It’s about having pain that no one can see and symptoms that no one understands. It’s about having family and friends look at you like you’re a hypochondriac or a wimp. It’s about being told you’re crazy when you’re totally and completely sane. No… IC is not about having to go the bathroom a lot. IC, it is MUCH more than that.

As fate would have it, I write again, beholden to no one. There is no organization, company, or group that tells me what I can or cannot say. I write and say what I believe to be true from my perspective, which is really all anyone can do. I do this with one goal in mind and that is to try and help my fellow IC patients to find relief from their suffering. My gift to you has always been my honesty and candidness about IC and I won’t stop offering that now.

I write to empower others who are suffering, as I was, with a disease called Interstitial Cystitis. I choose always to give people the benefit of the doubt that they can think for themselves, decide for themselves, and know what is best for them. As you probably already know, I am not a doctor, nurse, or “healthcare provider”. But I am a healer of sorts. We are all healers really. We all have the ability to heal ourselves and we all have the ability to help others heal. My books and my work on line are my effort to help others heal; to help them find their way to their own healing. This book is a patient’s perspective, a patient’s experience, a patient’s wisdom, and a patient’s research. Not only am I a patient, I am only one patient. I remind you always to look to, listen to, and talk with each other. You will always learn a lot with an open mind to others experiences, especially where IC and IC treatments are concerned.

Just because I am writing this book, does not mean that I have all the answers. I want that to be clear right up front. And, in reality, it is truly not for me to have all the answers. It is better that you find your own answers. As I always say, look to your own body and your own situation because that’s where you will find the answers that are right for you. Learn as much as you can about something and then listen to your gut. Your gut instincts, your higher self, whatever you prefer to call it, it will not let you down. You can believe me when I say to you that my way is clearly NOT the only way. I hope this came through loud and clear in To Wake In Tears. My hope is that by reading my books and then exploring further, you will come to realize that you can find your own way. Just seeing that someone like me, an ordinary person with IC, a person just like you, can find a way, can get better, I hope will allow you to believe that you too can find a way, that you too can get better.

Again I write with that feeling. I don’t want to let you down. Somehow I’ve been given this gift, this opportunity to talk with you and share with you how I got well. To hopefully help you find a way to get well too. I have decided again to just say how I truly feel. To say what I would say if I were sitting and talking with you in person. Things I might worry to say in a book. But I fear, that’s what most people do and often the truth is brushed over, made more “suitable” for reading (and for not getting sued). But because my concern lies with you not feeling any more pain and suffering than you already have had to, there are things I feel I must say. There are things I feel are important truths to be said. You might not agree with all of my truths because we all have our own perspectives and opinions, but I do feel quite certain that some of them will be hard to disagree with. Not because they are my opinions and I think I know what I’m talking about or anything, but because the truth just has a way of doing that.

With this kind of book, out of necessity I write as though you are looking to take a similar approach to treating your IC as I took myself. I wasn’t sure there would be this much interest in the way I did it as there has turned out to be. I didn’t realize that this many people would be open to trying alternative treatments. But I was wrong. More and more people are looking for alternatives. One reason, I believe, is because the medical treatments available at this time are simply not working out too well for many IC patients. I am not saying this to criticize the medical community, but rather to simply state a fact. I do not begrudge anyone his or her own opinion or treatment choice where IC is concerned. We are all so different and my IC may not be the same as your IC. Not everyone who reads this book will have IC the same way I had IC. And not everyone has a severe case, thank God. Some have a moderate and some have a mild case. Read this book then, with your type of IC in mind.

I worry so much for my IC friends. I watch as they try various things to get well. I watch as they take medications and undergo procedures and “listen to their doctor”. I watch as they go to the health food stores and to alternative health practitioners and I am afraid for them. Oh…I understand why they are doing what they are doing. And I most certainly understand their fears and worries because I have been there myself. Yet, there are so many warnings I want to scream out. Sometimes it takes everything out of me not to scream them out. But with every fiber of my being, I know and understand that everyone has to make their own way, find their own healing path, to find what works for them. I can’t tell you what to do in this book. I can’t tell you exactly what to do to heal from IC. But I can tell you what I did and what my opinions are based on my successes and my failures, based also on the successes and failures of other IC patients that I speak with regularly. Hopefully I can provide you with more ideas to either agree with or disagree with. Sometimes in reading something that you disagree with, it makes you even more certain; more resolved in what you know to be true for you. And in this way, if my opinions can help you then I will be very pleased. And if you do happen to agree with my views of IC and my approach to healing IC and if you would like to try to find similar ways to heal yourself, I hope very much that this book offers you many ideas and possible options to try out. But do not just listen to me. Do not do what I did just because it worked for me. Do what you think will work for you, in your situation, based on your body. The best advice I can ever offer my IC friends is to tell them to do what feels right to them. I say it so often in answer to their questions that they probably want to strangle me. I try to listen and tell them what I would do in their situation (given my perspective of IC) and then I let it go for them to decide. I will remind you again. We are all different. What works for one IC patient is not necessarily going to work for another. Take from this book then what feels right to you, and for you, and leave the rest behind.